tag:blogger.com,1999:blog-19161471497044247092024-03-28T03:18:08.339-07:00Navigating Through LifeCath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.comBlogger32125tag:blogger.com,1999:blog-1916147149704424709.post-72739060513046613062024-03-03T11:56:00.000-08:002024-03-03T11:56:34.083-08:00The Tunnel<p>
</p><p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">The man assured me it would be OK. <i>It would only take a few
moments, maybe 10 minutes,</i> he said, as he sensed my fear. They were only
taking one person down at a time. I slid down the small opening in the ground
after the man. I couldn’t see a thing. </span></p><p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></p><p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">The tunnel was pitch black, its walls tight
and one could only crawl along. We turned on our head lamps but seeing how narrow
the space was offered little relief. <span style="mso-spacerun: yes;"> </span>The
man led the way. I could only rely on his breath as assurance he was still there.
I kept reminding him, <i>hey</i>, <i>not too fast</i>, <i>wait for me!</i></span></p><p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></p><p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I
hardly knew him, and I didn’t even know his name, I realized. We only just met,
but he had been taking people along these historic tunnels for years. I found some
comfort in that. I have been claustrophobic most of my life, but I kept the
focus on being acutely present. The dark tunnel smelled damp and my mind kept
wandering to images of weird insects or snakes, hiding in the crevices. </span></p><p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></p><p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">His
voice would quieten as he went around corners, and I kept shouting anxiously, <i>wait</i>,
and he did. As we went further along, I noticed the silence, the stillness. I
gasped just thinking that my family did not know where I was, underground, somewhere
in Vietnam along the Viet Cong tunnels.</span></p>
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{page:WordSection1;}</style></p>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com0tag:blogger.com,1999:blog-1916147149704424709.post-37952227773344009582024-03-03T11:49:00.000-08:002024-03-03T11:49:16.518-08:00Angels
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><br /></span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><span style="mso-spacerun: yes;"> </span></span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">It was May 2022, just 4 months before you died.
I came for your 96<sup>th</sup> birthday dad. It was a wonderful surprise to
see you in the car as I peered in after collecting my bags from the arrival
area. </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><i><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Oh my god, dad is here,</span></i></strong><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> I shouted in disbelief! He was mostly bed ridden that year. I was so
full of childlike excitement, a mix of having survived yet another flight (I
have a fear of flying) and the excitement of being back home in Borneo, but
most of all seeing my dad again. It felt like the 1970s when I would return from
boarding school, hugging my father once again, inhaling his familiar smell, absorbing,
breathing, and feeling the hot humid tropical air against my face and body that
I missed so much from the coldness of England. Suddenly all my worries and
responsibilities melted away.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I clambered into the back seat of his Mercedes that
he could no longer drive, and moved over to the middle seat next to where he
was sitting. <span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>I held his warm soft hands. <i>So good to see
you dad</i>. Your eyes were soft and content. The driver seemed chuffed, proud
to be driving his beloved boss and thrilled to see him happy with his daughter.
Because of covid I hadn’t physically seen my father for over 2 years. The country
had been shut down. </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">At times like this, I felt we had a secret. My
dad acted differently around me. It’s like he no longer had dementia or
whatever he was supposed to have. He seemed his old self. He would ask about his
grandkids, how I’m doing and perhaps a comment about what was going on in world
affairs. Momentarily he remembered everything.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">A few days later I asked if he would like to go
for a drive. He didn’t always feel like going out. In his mind he had a myriad of
things to do, appointments to keep with the embassy or clients he had to see,
remnants of his old life mixed in with selective and vivid memories of then and
now. </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">My dad enjoyed going to the market to buy
fruits. It was necessary to take an entourage of helpers or staff as we ended
up calling them. It would take 2-3 people to maneuver him in and out of the
car, the driver, and the driver’s wife who was fond of my dad. My dad loved
anything that included being with other people and sharing the experience.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">This time, however, it was just the driver, my
dad and me. We were in the car ready to set off.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><i><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I would like to see the angels,</span></i></strong><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> you said.</span></strong></p>
<p class="MsoNormal"><strong><i><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Where are the angels?</span></i></strong><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> I would ask. </span></strong></p>
<p class="MsoNormal"><strong><i><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">You know where the angels are,</span></i></strong><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> he would reply, like of course I should know. </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I had an idea to go to the church I was married
30 years prior in my grandmother’s village of Limbanak. Perhaps going to the
church meant seeing the angels. The village used to be far in the countryside,
but now a days with the modern roads, it was only a half hour away. </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">The road presented with a hopscotch of potholes
due to the rainy climate, but the Mercedes had good suspension. Sometimes as we
went around a corner my dad would end up slumping on me, and I would gently
nudge him back. I thought back to many a drive we had. He wasn’t the best
driver quite honestly, a little lackadaisical, too laid back. At times he would
drift to the middle of the road, and we would hysterically say, <i>dad you can’t
do that</i>, to which he would calmly say <i>it’s all okay</i> after coming so
close to all of us being killed by an oncoming truck.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">On the winding unpaved road toward the church,
we drove past the remains of an old padi field, that used to dominate the landscape
in this area. <span style="mso-spacerun: yes;"> </span>A small hut appeared, so picturesque,
centered in the field, reminisce of a time long past. The scene looked like a watercolor
painting with sunlit trees and tall bright grass all around. </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><i><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Look dad, this is the area of your mother’s
village! </span></i></strong><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">The driver pulled over. My dad<i> </i>looked
out of the window lifting his head to see and pointed, <i>look that’s her house</i>,
glancing over his glasses at the deserted hut.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Yes dad, I think that could be it, going along
with his memory even though the likelihood was as remote as the whereabouts of
this village once was.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Perhaps he sensed his mother there, his brothers,
sisters. Could this be where the angels were? My dad seemed comforted, calm. </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I described to the driver about my dad’s life
here as a boy, telling the story of his humble beginnings, his simple life, but
really for my dad to hear that I really knew his life, and that his stories
were never to be forgotten. They will be passed along the generations.</span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p>
<p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">When I reflect back to that day, I was truly in
the presence of angels.</span></strong></p>
<p class="MsoNormal"><span style="mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></p>
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{page:WordSection1;}</style><p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"> </span></strong></p><p class="MsoNormal"><strong><span style="font-family: "Calibri",sans-serif; font-weight: normal; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPRkQWyn563n1bAQnuU5RCR9mb_TbgTbZqXYHqjG1VKuTKVV36eP0MW81Q3ng5qgCsUr3X2KI7iJdSKlnNGcPZuVYp18UtxymFDAqMNO81qdssbrsgwwi2I3jZOWS0aOGVAHqWNsK5UdUJJF7yHOazwJRA3ZW9zcQvnPeoutoW1_voGcUqiM_CA4FiO6o/s4032/angels.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPRkQWyn563n1bAQnuU5RCR9mb_TbgTbZqXYHqjG1VKuTKVV36eP0MW81Q3ng5qgCsUr3X2KI7iJdSKlnNGcPZuVYp18UtxymFDAqMNO81qdssbrsgwwi2I3jZOWS0aOGVAHqWNsK5UdUJJF7yHOazwJRA3ZW9zcQvnPeoutoW1_voGcUqiM_CA4FiO6o/s320/angels.jpg" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">The deserted hut in the field that day<br /></td></tr></tbody></table><br /> </span></strong></p>
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{page:WordSection1;}</style></p>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com0tag:blogger.com,1999:blog-1916147149704424709.post-30368778307002976152023-07-27T15:57:00.009-07:002023-07-27T16:01:17.558-07:00Letters to my Dad<div style="text-align: left;">My late father was one of my most favorite people in the world. After he passed away last September, I started writing letters to him as a way to connect to him, to remember him and as a way to deal with my sadness. He used to love the ways I wrote letters when I was in boarding school, so I felt moved to start writing letters to him again. Of course, I imagined his reply to me.</div><p>Dear Dad,<br /><br />It’s March 24, 2023. You’ve been gone 6 months. I miss you.<br /><br />I went for a drive today to look for the yellow mustard flowers that usually swarm the hills this time of year, especially after the heavy rains we’ve been having. I was out of luck, but on the way home I saw an old silver Mercedes and it reminded me of you.<br /><br />It took me back to when you used to come home from work in your silver 1970’s model Mercedes. I must have been 7 years old. And I can’t remember if you beeped at the bottom of the driveway or if I just heard your car, (as I would be anticipating your arrival in the late afternoon), and you would wait for me while I came running down the steep driveway as fast as I could to sit on the bonnet (hood) of the car. I remember the warmth of the bonnet and hanging on tightly to whatever I could reach for. The engine would rev a little as you steered the car up the long driveway into the garage. I always kept my balance despite the inclination!<br /><br />It was a feeling of pure joy to have you home again. I remember feeling so excited, and today it really made me smile. <br /><br />Love, Cath<br /><br />xxx<br /><br />Dear Cath,<br /><br />I miss you too. Yes, I remember that well. I couldn’t wait to see you after my busy day at the office seeing clients. I would honk my horn, beep beep, and wait for you to come running down the hill. You would run so fast, and you never had shoes on. You would jump onto the bonnet, and then I would drive up the hill. And I revved it for a bit of excitement! I never worried you would fall. You were a pro. It was exciting that we did something a little thrilling. I know Mum didn’t really approve!<br /><br />We did so many things together after I came home. Do you remember? There were the times we would go hiking after we had our tea. Just steps from the house we would find a sturdy long stick each to help us with our adventure. In those days before the surrounding area was built, our house was like an island embraced by the rainforest. Just down from the house there were narrow orangey clay paths carved through the dense jungle. I would always whistle a tune to let people know we were coming. But I don’t remember ever bumping into anyone.<br /><br />I would tell you so many stories about my childhood. One time I shared how it was during the Japanese occupation when my brothers, sisters and I would hide out in the nearby jungles to be safe. I pointed out plants to watch out for, and insects to be wary of.<br /><br />And of course, our walks on the Tanjung Aru beach. Do you remember how I taught you the multiplication tables by writing it out on the sand? And in between we would have a race. But I let you win! Oh, except for this one time, I had to show you how fast I really was!<br /><br />I know we shared many memories and experiences. They are there to make you smile. <br /><br />I hope you find your yellow mustard flowers next time.<br /><br />Love, Dad.<br /><br /><br /><br /></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIjIaHDByuj7R-YiUpuJ7ZLIjMFMl3Vrw-kCDJGZqs2hkCqOhz-vsz5qezSI3wMzt5gnruLdjQ9NbxJcovndUwFGaUyn-KNDzwVM__Fu3VhVG-zjG28Ui-RAflV7S_EgssJVpvlZR6Ml4uJxfDJ2tqpY4eHVvofH-x_Ef8BFTyet05YH0vuhvnV-IaBOc/s2801/IMG_0575.heic" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="2801" data-original-width="1868" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjIjIaHDByuj7R-YiUpuJ7ZLIjMFMl3Vrw-kCDJGZqs2hkCqOhz-vsz5qezSI3wMzt5gnruLdjQ9NbxJcovndUwFGaUyn-KNDzwVM__Fu3VhVG-zjG28Ui-RAflV7S_EgssJVpvlZR6Ml4uJxfDJ2tqpY4eHVvofH-x_Ef8BFTyet05YH0vuhvnV-IaBOc/s320/IMG_0575.heic" width="213" /></a></div><p></p><p><br />In memory of my sweet Dad, </p><p>Thomas Jayasuriya.<br />(5/5/1926 – 10/9/2022)</p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><br /></p><h3 style="text-align: left;"><br /></h3><p><br /></p><p style="text-align: center;">Goodbyes are only for those who love with their eyes. Because for those
who love with heart and soul there is no such thing as separation.<br />― Rumi</p><p> </p>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-24119083901112669842020-07-27T17:37:00.003-07:002022-09-01T12:02:06.245-07:00Photo Of My Father<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMvE3MrCbxE43IISutqu8eURHlO2gCcv93lfrU3VpWzRaTJT_P8xL2WTWe2d1ZZLY6wCoq2BNieGaJj8wQ17rz3Bv73B0VEVz5NdyLAmtTKZyEeyjyFetW-x_d0rzc1CmykJRaPzPSX80/s1600/IMG_4299.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1529" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMvE3MrCbxE43IISutqu8eURHlO2gCcv93lfrU3VpWzRaTJT_P8xL2WTWe2d1ZZLY6wCoq2BNieGaJj8wQ17rz3Bv73B0VEVz5NdyLAmtTKZyEeyjyFetW-x_d0rzc1CmykJRaPzPSX80/s320/IMG_4299.jpeg" width="305" /></a></div>
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I was fortunate enough to grow up in a tropical paradise.
The island of Borneo is an exotic island and I always thought of my childhood
in that way. My mind drifts back and forth to memories that are triggered as I
focus on the old black and white photograph in my hand. My father was instrumental
in my life, and I felt so proud of him. The photograph was taken while he was
in England in the 1950’s, when he had won a 5-year scholarship to study law. It
was unusual at that time for an Asian man to be included in the prestigious
college he attended. My father was a well-dressed, tall, dark man with a broad
smile. He had curly hair, from his Sri Lankan roots, which he slicked back with
a sticky gel, like they did at that time. He lit up any room and was a real
gentleman. In the photo my father is posing crouched down, wearing a suit and
tie, and a boyish smile that draws you in. He had his whole life in front of
him. In the background there’s a park with people and in the distance part of
an old stone building with a spire. </div>
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My father was in his 20’s at the time the photograph was
taken, when Britain still colonized much of the world including Borneo. The
Japanese arrived in Borneo in 1946 and plundered the land. I remember my father
telling me that one day, at age 16, there was no more school. The war ravaged
on for some years. Then came the day the Japanese soldiers came to his house to
take his father away. They had falsely suspected he was a spy. That would be the
last time he saw him.</div>
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I put my glasses on to really inspect my father’s face in the
photograph. His face did not reflect any of the burdens of the war in the 5
years prior, nor the grief of losing both his parents and a brother. What I see
instead is the kindness in his heart and the compassion he felt for all people.
I feel his sense of adventure and having a purpose in life. He knew how fortunate
he was to have the opportunity presented to him. He approached it with courage
and fearlessness.</div>
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As I glance again, I wonder who took the picture. I am most
fortunate to be able to still ask him that question. Now at age 93, my father still
has that same boyish smile.</div><br /><div class="MsoNormal">
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Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com0tag:blogger.com,1999:blog-1916147149704424709.post-79092085776957157002020-07-27T15:48:00.006-07:002020-07-27T15:52:07.126-07:00Adventures in Travel<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgITBKdurlNsQv6jxg9pxXUW3B0hc15QPPA7J9EHPIuIKe9tSbTHSI7_8s0oxtnyl-X5y5zGLYstDuPH0IDHNemT7ij8biZLYSapQC8BYwI2LJR8w7Olw2dEPbLZty4G33tdEwKlHuxSZ8/s1600/Abecedarian.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="609" data-original-width="1600" height="151" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgITBKdurlNsQv6jxg9pxXUW3B0hc15QPPA7J9EHPIuIKe9tSbTHSI7_8s0oxtnyl-X5y5zGLYstDuPH0IDHNemT7ij8biZLYSapQC8BYwI2LJR8w7Olw2dEPbLZty4G33tdEwKlHuxSZ8/s400/Abecedarian.png" width="400" /></a></div>
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Beautiful islands emerged out of the calm tropical sea. My
family owned a small boat with a 40HP engine that we took out onto the ocean.
In those days we would just drive the boat up to the shore and planted the
anchor right onto the soft sands.</div>
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Clambering over the rocks with my father when I was young as
we walked around the islands, holding his hand in the warmth of the sun is a
moment I will not forget. </div>
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During one conversation he said how it was during the war,
when the Japanese bombers would come down low. </div>
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Engines roared. Plane rides were exciting to me. Until the
day an engine exploded on take off. </div>
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Flash-forward to now, I have a flying phobia. But I don’t let
that stop me traveling to far-flung places.</div>
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Granada, Spain, had a small airport. I was reluctant to fly
into it. I looked up plane crashes to discover there hadn’t been any. But I
wanted to be safe anyway, so I flew into Madrid and took the five-hour train
ride.</div>
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Houses perched delicately upon cliffs, colorful in the
setting-sun hours, picturesque as we sailed the azure waters of Cinque Terra. </div>
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I was happy once I reached the summit, my altitude sickness
faded into thin air.</div>
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Junk food is not my forte and when I’m traveling I eat as
healthily as I can. Thailand and Vietnam suit me most, local pho or white rice
with chicken. It’s different for me now since I became a vegan. </div>
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Kaleidoscopic sunset colors in Costa Rica reminded me of
those in my hometown in Asia. Same latitude.</div>
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Longing for something a little different I took a trek to
Iceland with my daughter. </div>
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Meeting like-minded travelers finds one talking to people
you would never otherwise talk to.</div>
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Necessary, that when in Kingston, visit the home of the
great Bob Marley.</div>
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Orphanages were everywhere in Cambodia. I visited one and
made a donation to buy a school desk and computer.</div>
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Perfect visibility provided the best diving in Tahiti. It
was my honeymoon. My son was conceived. </div>
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Quiet and contemplative was the moment I lay in the soft
snow after a fall in the Swiss Alps, my skis nowhere to be seen.</div>
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Realizing there I was in Paris, and that that it had been 30
years since I last saw Rodin’s Le Ponseur.</div>
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Sometimes when I travel I bring my own pillow. </div>
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To travel is to change up your routine and your mind-set.</div>
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Unexpected weather forced us to abort a landing during a
typhoon in Hong Kong reinforcing my fear of flying.</div>
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Very often I find myself afraid. My father told me he didn’t
fear anything. We were different in that way.</div>
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Winding up in California may have been the best thing I did.</div>
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Xtapa, Mexico, I had to have a Bloody Mary before boarding
the flight.</div>
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You only get one life. Live it.</div>
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Zigzagging along hiking trails is my daily ritual. I get the
same feeling as traveling.</div>
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Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-2596247567850275372016-04-28T21:59:00.001-07:002016-04-28T22:05:25.698-07:00Thoughts on the FDA Advisory Committee Meeting to Consider Eteplirsen<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="color: #262626; font-family: "times";">Catherine Jayaysuriya</span></div>
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<span style="color: #262626; font-family: "times";">Dusty’s Mom<o:p></o:p></span></div>
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<span style="color: #262626; font-family: "times";">Coalition Duchenne</span></div>
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<span style="color: #262626; font-family: "times";">Founder and Executive Director</span></div>
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<span style="font-family: "times";">Monday, April 25th's Advisory Committee meeting felt more like a cross examination in a criminal case than a
fair discussion about the efficacy of a promising treatment for Duchenne.<span style="mso-spacerun: yes;"> </span>As the clinical data on eteplirsen was
scrutinized, minor details became exaggerated, such as <span style="mso-spacerun: yes;"> </span>doubts on validity of the 6 MWT, and ignorant
opinions such that boys with Duchenne can walk if they put their minds to it, to
be the same level as key facts. I question their competence to even be on the
panel.<o:p></o:p></span></div>
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<span style="font-family: "times";">The Advisory panel stood
in judgment of something they don’t fully understand, which is the complexity
of the Duchenne situation. </span><span style="font-family: "times"; mso-bidi-font-family: "Helvetica Neue"; mso-fareast-language: JA;">They characterized the parents as
‘emotional’ which diminishes our input as we actually have the best ‘fact
based’ knowledge and first hand experience of Duchenne. <span style="mso-spacerun: yes;"> </span>And they didn’t seem convinced by the
testimony of parents, and most importantly, the boys who are on the eteplirsen
trial themselves. </span><span style="font-family: "times";">There is a strong need
to break away from herd mentality of bureaucracy and business as usual.</span><span style="font-family: "times"; mso-bidi-font-family: "Helvetica Neue"; mso-fareast-language: JA;"><o:p></o:p></span></div>
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<span style="color: #262626; font-family: "times"; mso-bidi-font-family: Times; mso-fareast-language: JA;">I advocate for the generation of boys
who have lived the natural progression of the disease. <span style="mso-spacerun: yes;"> </span>I feel certain that there were many on the
panel who do not understand that when Duchenne is left untreated, the
progression is cruel and relentlessly progressive. <o:p></o:p></span></div>
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<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOa6T3jR0eXX32PneOzHK-uwEGwbDnaij7vH_NhIMBM2GmgyH8GRtXDBDsubQOZamXKWSWcQ_fChmSnpNsUHwPUQ7ujQ9Sw4vCQWQM6H8RvgGLLfjDgh4r7BOzk37yYt9JaUSaWC8UZv4/s1600/IMG_4026.JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOa6T3jR0eXX32PneOzHK-uwEGwbDnaij7vH_NhIMBM2GmgyH8GRtXDBDsubQOZamXKWSWcQ_fChmSnpNsUHwPUQ7ujQ9Sw4vCQWQM6H8RvgGLLfjDgh4r7BOzk37yYt9JaUSaWC8UZv4/s200/IMG_4026.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dusty Brandom, age 23.</td></tr>
</tbody></table>
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<span style="color: #262626; font-family: "times"; mso-bidi-font-family: Times; mso-fareast-language: JA;">My 23-year-old son Dusty Brandom will
not benefit from eteplirsen but would benefit from the follow on drugs
targeting other exons once approval is made. </span><span style="font-family: "times"; mso-bidi-font-family: Verdana; mso-fareast-language: JA;">Dusty has been
waiting for this treatment ever since we funded Steve Wilton's oligos work through
the Dusty Brandom Fellowship in 2004. It feels like Dusty has been hanging on
to a cliff, but now by his fingertips. By the FDA not approving, we will lose a
generation of boys including my precious son. We really are running out of
time.</span></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXuvRihe71vJtdkGY25AkCdC5ZJ85sD__ye3CHXMcm874uUAgTsh0K8PtoexyR6xc4TdJrrexyFgMpwAnhU_pP6k04d-y9jHeREevFHFcOSI6UI13RghyphenhyphenKphU3shHZA1RkG3ZmykF4s3k/s1600/IMG_3975.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="172" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXuvRihe71vJtdkGY25AkCdC5ZJ85sD__ye3CHXMcm874uUAgTsh0K8PtoexyR6xc4TdJrrexyFgMpwAnhU_pP6k04d-y9jHeREevFHFcOSI6UI13RghyphenhyphenKphU3shHZA1RkG3ZmykF4s3k/s200/IMG_3975.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Steve Wilton and me.</td></tr>
</tbody></table>
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<br /></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: "times"; mso-bidi-font-family: Times; mso-fareast-language: JA;">The judgment made at the 11<sup>th</sup>
hour literally, felt like a series of bullets that deeply wounded our Duchenne community.
But we don’t fall easily. In spite of my sadness and disappointment, I do have
a glimmer of hope, because FDA Director Janet Woodcock, in her opening remarks,
reminded the panel of the harm that could be done by failing to approve a drug
that does work. The final judgment comes May 26<sup>th</sup>.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: "times"; mso-bidi-font-family: Times; mso-fareast-language: JA;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen="" class="YOUTUBE-iframe-video" data-thumbnail-src="https://i.ytimg.com/vi/pczSwOj8-Bc/0.jpg" frameborder="0" height="266" src="https://www.youtube.com/embed/pczSwOj8-Bc?feature=player_embedded" width="320"></iframe></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="color: #262626; font-family: "times";">Thank you Senator Marco Rubio, for championing our
Duchenne cause in your speech to Congress today.</span></div>
<div class="MsoNormal">
<br /></div>
</div>
Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com0tag:blogger.com,1999:blog-1916147149704424709.post-32065187730031383132012-09-19T16:06:00.003-07:002012-09-19T16:07:49.905-07:00Lessons From A Mountain<div dir="ltr" style="text-align: left;" trbidi="on">
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<br />
<br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNYdoAHF6BPG-D0iF7EZHiOqGmaKiWB05Z1ZGC5RNnJgtSfQrDIaedpH6Y9Z_ZeUYLRhGjQtB0encj53Ksa7nybRx0jEMvF3a6Q0K4nm2xP-kje_H4m5pD5NuTZ47-cc-w3KeZC9sSI90/s1600/just+below+summit-resize.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNYdoAHF6BPG-D0iF7EZHiOqGmaKiWB05Z1ZGC5RNnJgtSfQrDIaedpH6Y9Z_ZeUYLRhGjQtB0encj53Ksa7nybRx0jEMvF3a6Q0K4nm2xP-kje_H4m5pD5NuTZ47-cc-w3KeZC9sSI90/s320/just+below+summit-resize.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Climbing Mt Kinabalu!</td></tr>
</tbody></table>
<br />
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<span style="font-family: Verdana, sans-serif;">The months of planning and
preparing for Expedition Mt Kinabalu 2012 have come to an end. The climb was a
success and now everyone has left, mostly by plane, back to their countries,
their homes and their families.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">I decided on my last day
in Kota Kinabalu, to take a boat trip out to one of the nearby islands, to take
advantage of the fact that I was free for the day.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">As the speedboat left the
dock I looked back at a cloudy sky, and noticed every now and again, Mt Kinabalu
emerging in and out from behind the clouds, childlike, as if playing a game. It
made me smile.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">I reflected upon our
recent climb as I kept looking back at the mountain dancing with the clouds. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal">
<span style="font-family: Verdana, sans-serif;">Although we had a few
parents who were climbing for their sons, most of our 64 climbers who
participated this year had never heard of Duchenne muscular dystrophy. Over the
months before the climb they had contacted me, wanting to be part of our quest
to raise global awareness for Duchenne and to help make a difference.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">The two-day climb was
challenging. The first day was a long hike up to 11,000 feet where we spent the
night at our lodging Laban Rata. Much of the group arrived in the pouring rain
and by mid afternoon a heavy mist had swept in, dampening any hope of seeing the
mountain peaks above. The tiredness of the day kicked in and the altitude
didn’t help, but we were all upbeat and happy to have the day’s climb behind
us.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">The weather on Mt Kinabalu
is unpredictable, and sometimes the summit trail is closed if conditions get
too dangerous. With the rain beating down outside, we listened to this briefing
while we ate dinner. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">The next day came around
quickly, and not many of us slept much. In the early hours at around 2 am, we
began to get ready for the last 2,000 feet to the summit. As we busied
ourselves getting equipped with jackets, headlamps and gloves, I suddenly
realized that not only had the rain stopped, but above, the stars were all
around us. This meant that we would have a most amazing view from the top, and
most exciting for me, we would be there to greet the sunrise.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">As the dawn approached we
saw the shadows of the peaks on either side of us, and in the distance, a trail
of shimmering lights from everyone’s headlamps leading us to the top. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">The last hour was a test
of physical endurance and mental resolve. The rock face was slippery and
relentless. Out of the darkness we clambered over the last of the granite
boulders as the sky transformed into a kaleidoscope of colors. We reached the
summit in time for the sunrise. After the long climb the victory was sweet.
Being surrounded by the sky’s comforting colors felt tranquil and peaceful. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">The climb down had its
challenges, with some slips and falls here and there, but nothing serious. By
the time we arrived at the bottom, Mt Kinabalu was completely shrouded in its
cloak of mist.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">Back on my island trip, from
the boat, I once again glanced back at Mt Kinabalu. I could make out the faint
outline of its peaks through the distant clouds. I smiled again to myself and
then smiled at the mountain. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">I was reminded of our
oneness and how we all came together for something good. Everyone travelled to
Sabah, leaving behind their busy lives, to climb for all the boys and young men
with Duchenne. Our complaints of exhaustion, of our tired and aching muscles
faded to thoughts of the boys and young men who we climbed for. It was in the
quiet moments that we understood why we were here. It is the smiles I will
remember; smiles when we reached the summit, and when we got back down the
mountain.<o:p></o:p></span></div>
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<span style="font-family: Verdana, sans-serif;">But it is the smiles of
the boys and young men with Duchenne that I will remember most. The smiles of Albert,
Azmi, Edmund, and my son Dusty, innocent, pure and playful, that are etched
into my mind.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: Verdana, sans-serif;">Again, like I always do, I
blinked Mt Kinabalu into my memory.</span></div>
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<br /></div>
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Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-86752530632791855622012-06-28T13:14:00.003-07:002012-06-28T13:14:41.136-07:00Lucas Brandom Climbs A Mountain In Borneo for Duchenne<div dir="ltr" style="text-align: left;" trbidi="on">
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<tr><td class="tr-caption" style="text-align: center;">Lucas Brandom climbing Mt Kinabalu in 2011</td></tr>
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<span class="Apple-style-span" style="color: #292727; font-size: x-small;">(This article was written by Patrice Apodaca, a writer for the Daily Pilot, Newport Beach).</span><div id="story-body-text" style="color: black; font-size: 14px; line-height: 1.43; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; position: relative;">
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Lucas Brandom climbed a mountain for his brother.</div>
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Shivering cold, soaked to the skin and numb with exhaustion, Lucas made the excruciating final push to reach the 13,455-foot summit, then swore he'd never do it again.</div>
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But, sure enough, after several months, the memories of his aching body receded. Propelled by the strength of his brotherly devotion, the 17-year-old Newport Beach resident is preparing to climb Mt. Kinabalu on the island of Borneo in<a class="taxInlineTagLink" href="http://www.dailypilot.com/topic/intl/malaysia-PLGEO00000159.topic" id="PLGEO00000159" style="color: rgb(0, 66, 118) !important; font-weight: normal; text-decoration: none;" title="Malaysia">Malaysia</a> once again to promote awareness of the disease that has robbed his sibling of a normal life.</div>
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Lucas is the younger brother of Dusty Brandom, a remarkable young man whose battle with <a class="taxInlineTagLink" href="http://www.dailypilot.com/topic/health/diseases-illnesses/muscular-dystrophy-HEDAI00000318.topic" id="HEDAI00000318" style="color: rgb(0, 66, 118) !important; font-weight: normal; text-decoration: none;" title="Muscular Dystrophy">Duchenne muscular dystrophy</a>, an incurable degenerative disease that afflicts one in 3,500 boys, has been previously chronicled in this column (<a href="http://www.dailypilot.com/news/tn-dpt-0618-apodaca-20110617%2C0%2C4973640.story" style="color: rgb(0, 66, 118) !important; font-weight: normal; text-decoration: none;">"Dusty's road is winding but rewarding,"</a> June 17, and <a href="http://www.dailypilot.com/news/columns/tn-dpt-1106-apodaca-20111104%2C0%2C1118593.story" style="color: rgb(0, 66, 118) !important; font-weight: normal; text-decoration: none;">"Dusty continues on his path,"</a> Nov. 6).</div>
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Dusty, now 19, has lost the use of his arms and legs, requires breathing assistance, and has severe scoliosis and a raft of internal ailments caused by the <a class="taxInlineTagLink" href="http://www.dailypilot.com/topic/health/human-body/genes-chromosomes-HHA000024.topic" id="HHA000024" style="color: rgb(0, 66, 118) !important; font-weight: normal; text-decoration: none;" title="Genes and Chromosomes">genetic</a> muscle-wasting disorder. In the year since I first wrote about him, the disease has continued to take its toll; he can no longer eat solid food, and subsists on a diet of Ensure liquid supplements.</div>
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Dusty has endured his plight with courage, dignity and resilience. Yet, as anyone with a seriously ill family member can attest, the affects reverberate beyond just one person.</div>
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The disease has also had a major impact on the young lives of Lucas and sister Gabriella, 12, who have grown up watching their beloved big brother suffer as Duchenne continues its cruel onslaught.</div>
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But if their situation invites sympathy, Lucas offers another perspective.</div>
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"Some people could get angry, but at the same time you could look at it as a gift," he said. "People can learn a lot from the disease, just about life. People with Duchenne don't really have egos. They're non-judging.</div>
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"It showed me how to see people for who they are, in a nonjudgmental way."</div>
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Duchenne has also influenced how Dusty and his siblings relate to each other. There's no competition or discord among them, and they are highly protective of each other.</div>
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"I've never gotten in a fight with my brother or sister," Lucas said. "It's made us all more mature."</div>
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I don't doubt it. To an outside observer, the Brandom kids appear to have a worldly wisdom and quiet intensity that's unusual to have at their ages.</div>
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While their lives revolve around a tight-knit family unit, Lucas and Gabriella have also found ways to pursue their own interests.</div>
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Lucas, who will start his senior year at Corona del Mar High School in September, is an accomplished musician and plays bass in the band Final Crush. He practices at least four hours a day and hopes to study music in college.</div>
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Gabriella, who is home-schooled, loves to bake and cook <a class="taxInlineTagLink" href="http://www.dailypilot.com/topic/health/diets-dieting/vegan-diet-HEDI00004.topic" id="HEDI00004" style="color: rgb(0, 66, 118) !important; font-weight: normal; text-decoration: none;" title="Vegan Diet">vegan</a> meals from scratch. She has also discovered a gift for storytelling, and composes letters to Dusty as if the characters she invents have written them.</div>
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"They have their own secret language," said their mother, Cath. "Their ages are different, but somehow the age doesn't matter."</div>
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The family also rallies behind the charity started by Cath, Coalition Duchenne, which raises funds to advance research into treatments for the cardiac and pulmonary damage caused by the disease.</div>
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The nonprofit also organized last summer's mountain climbing expedition to generate awareness of Duchenne.</div>
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Dusty was able to make the difficult journey to Borneo then and waited at the hotel with his father, Neil, and Gabriella, while Cath, Lucas, and 33 other climbers from around the world ascended the mountain during an unusually fierce storm.</div>
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The second Kinabalu climb is scheduled for August. This time around, Lucas plans to train beforehand, and will be accompanied by two friends, Ian Henderson, a recent CdM graduate, and Evan Romano, who will graduate next year with Lucas.</div>
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A group of 60 climbers from around the world will join the effort, including a documentary film team and the U.S. ambassador to Malaysia. The expedition is generating a good deal of publicity there; last week Cath was interviewed about the climb on Malaysian television.</div>
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Uncertain if he could once again tolerate the long journey and conditions in Malaysia, Dusty has decided to stay at home in Newport Beach, along with Neil and Gabriella.</div>
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There's no trace of self-pity or bitterness in Dusty, who said he simply "tries to deal with things as they happen."</div>
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He thinks it's "really cool" that Lucas will once again trek to the mountaintop on his behalf.</div>
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"It's really great that everyone is supporting me and all the other boys who have Duchenne."</div>
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I asked Lucas to recall some of his favorite memories of he and Dusty together. He talked about playing at the beach when they were little and Dusty could still walk. He remembered an elementary school talent show where they performed together. Lucas was on drums and Dusty was in his wheelchair, playing guitar.</div>
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But that was then. Now, as Lucas looks ahead to his second attempt to scale a mountain for all the boys afflicted by Duchenne, he knows it will be Dusty he'll be thinking about.</div>
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"He motivates me to climb," he said.</div>
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For more information on Coalition Duchenne and the Mt. Kinabalu expedition, visit<a href="http://www.coalitionduchenne.org/" style="color: rgb(0, 66, 118) !important; font-weight: normal; text-decoration: none;">http://www.coalitionduchenne.org</a>.</div>
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</div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-45311831918984425772012-03-05T22:06:00.003-08:002012-03-05T22:20:24.468-08:00Blinking in the Grand Canyon<div dir="ltr" style="text-align: left;" trbidi="on"><br />
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<tr><td class="tr-caption" style="text-align: center;">View from the South Rim</td></tr>
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<div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana;"><span style="font-family: Verdana;"><br />
</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana;"><span style="font-family: Verdana;">A visit to the Grand Canyon in early spring is a reminder of the big picture of life, and that perhaps all our worries are small and we can spend too much time dwelling on them. I contemplated this as I looked out from an elevation of 7,000 feet into the vastness of the Grand Canyon, breathing in the cool spring air, as a light breeze gently blew my hair into my eyes.<o:p></o:p></span></span></div><span class="Apple-style-span" style="font-family: Verdana;"> <div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">We arrived close to sunset, after a long eight-hour drive. We watched as the Grand Canyon transformed itself into a kaleidoscope of colors. The golden reddish light lingered upon the highest plateaus of the canyon as its depths disappeared into the darkness of the night. We were then treated to the darkest of skies and to thousands of the brightest stars.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">As the next day’s dawn began to brighten the day, we took a drive around the canyon’s south rim. We stopped along the way and walked out onto the various precarious vantage points, all with breathtaking views and sheer drops of thousands of feet into the canyon. At times I was a little concerned that my son’s wheelchair was too close to the edge or that my other two were leaning too casually against the railings, especially since it was quite windy.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">The first time I visited the Grand Canyon was over 30 years ago. Nothing had really changed. For a moment, time really had stood still. I remembered sitting on a ledge at a lookout point and I began to search for that exact spot, in the hope of taking me back to that time. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">I was reminded of the awe I felt seeing the canyon for the first time and making sense of its creation and existence. As I looked around I saw families, couples, hikers and people from all over the world just sitting and absorbing the view.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">We continued along the path to Mohave Point. It was here that we glanced down and saw for the first time, the azure colored Colorado River, meandering far below on the canyon floor. <o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana;">It was difficult to comprehend the fact that the Colorado River established its course through the canyon at least 17 million years ago and continues to carve and form the canyon. <o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana;">But it was easy to notice and reflect upon how small we are and our feats somewhat insignificant compared to what the river has been creating.<o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana;">As I watched the river, I thought about the flow of time. I was here as a teenager, and now years later I am here with my own family. One day it will be my children’s children who will be standing upon this very lookout point. <o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana;">I thought about the river as a teacher about life, the way it meanders softly along downstream; with ease it flows freely around obstacles in its path; peacefully and patiently, as if just focused on being. The river isn’t dragged down by the hardships of life, it just goes with the flow, on and on, like it has for 17 million years.<o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">Our trip to the Grand Canyon was a short one, but our memories will be forever. We said goodbye to the Grand Canyon by blinking in a certain view and sealing it into our memory. <o:p></o:p></span></div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
</div><div class="MsoNormal" style="mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana;">As I held my daughter’s hand, I shared with her that the river is a good example of how to be in life. After all, we are all creating and carving out our own canyons, our lives. And we are the river that runs through it all.<o:p></o:p></span></div><!--EndFragment--> </span><br />
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<tr><td class="tr-caption" style="text-align: center;">The Colorado River</td></tr>
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</div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-91207673032590398512012-02-13T13:24:00.000-08:002012-02-13T13:44:54.582-08:00Expedition Mt Kinabalu!<div dir="ltr" style="text-align: left;" trbidi="on"><span class="Apple-style-span" style="font-family: arial; font-size: 13px;"></span><br />
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<tr><td align="center" class="don_title" style="font-family: Arial; font-weight: bold;"><span class="Apple-style-span" style="font-family: Verdana; font-size: large;"><span class="Apple-style-span" style="color: #970f01;">Summit of Borneo</span><br />
August 25th, 2012</span></td></tr>
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<tr><td class="don_welcome" style="color: black; font-family: Verdana;">Welcome to the second annual Expedition Mt Kinabalu! On August 25th 2012, I will be part of a team of 60 international climbers who will scale Mt Kinabalu, summit of Borneo, to raise global awareness and funding for Duchenne muscular dystrophy.<br />
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<div style="color: black; font-family: Verdana;">Duchenne is a fatal, progressive muscle wasting disease that affects one in 3,500 boys worldwide. It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. It leaves their minds unaffected and full of dreams.</div><div style="color: black; font-family: Verdana;"><br />
</div><div style="color: black; font-family: Verdana;">This is a personal quest. I will be climbing for my 19-yr-old son Dusty who has Duchenne, and for all the thousands of boys who are faced with the challenges of this disease everyday.</div><div style="color: black; font-family: Verdana;">All money raised will go directly to funding promising research that will extend lives and find a cure for Duchenne.</div><div style="color: black; font-family: Verdana;"><br />
</div><div style="color: black; font-family: Verdana;">Please sponsor me by clicking on the link below, and help change the future of all the boys and young men with Duchenne worldwide.</div><div style="color: black; font-family: Verdana;"><br />
</div><div style="color: black; font-family: Verdana;">With sincere gratitude,</div><div style="color: black; font-family: Verdana;"><br />
</div><div style="color: black; font-family: Verdana;">Cath Jayasuriya</div><div style="color: black; font-family: Verdana;"><br />
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</span></div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-25990089704818602082012-01-07T18:55:00.000-08:002012-01-07T18:55:13.978-08:00That Was The Year That Was!<div dir="ltr" style="text-align: left;" trbidi="on"><br />
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from Coalition Duchenne!</div><div style="color: #970f01; font-family: Arial, Helvetica, sans-serif; font-size: 19px; margin-bottom: 10px;">That Was The Year That Was!</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">2011 has been a year of action for <a href="http://www.coalitionduchenne.org/" rel="nofollow" style="color: #336699;" target="_blank">Coalition Duchenne</a>. After its inception in March, Coalition Duchenne, a 501(c)(3) non-profit organization based in Newport Beach, California, held two successful events:</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px; padding-bottom: 15px; padding-left: 15px; padding-right: 15px; padding-top: 15px;"><strong><a href="http://www.coalitionduchenne.org/flash/mt2011/MKgallery_2011.html" rel="nofollow" style="color: #336699;" target="_blank">Expedition Mt Kinabalu, Summit of Borneo:</a></strong> On September 9th, a team of 35 international climbers from nine different countries scaled Mt. Kinabalu, the 13,455 ft summit of Malaysian Borneo<br />
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<strong><a href="http://www.coalitionduchenne.org/html/musicPower.html" rel="nofollow" style="color: #336699;" target="_blank">Music Power:</a></strong> On November 11th, six incredible bands featured their music to over 600 people at the Galaxy Concert Theater in Orange County, California.</div><div style="color: #970f01; font-family: Arial, Helvetica, sans-serif; font-size: 19px; margin-bottom: 10px;">Meeting President Obama</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">The highlight of the year was a trip in June to Washington DC to privately meet with President Barack Obama in the Oval Office. This was my son Dusty's wish through the Make A Wish Foundation. We told the President all about Duchenne and Coalition Duchenne. Michelle Obama said of the President that when it comes to the people he has met, he has a memory like a steel trap. He will never forget a story like Dusty's and that it becomes imprinted on his heart, and he carries it with him every day. <a href="http://cathjayasuriya.blogspot.com/2011/07/meeting-president-barack-obama.html" style="color: #336699;" target="_blank">Read the story here</a>.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Coalition Duchenne lived up to its mission to raise global awareness for Duchenne muscular dystrophy, and raised much needed funds for research to find treatments and a cure.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Borrowing from Martin Luther King Jr.,</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 17px; margin-bottom: 10px;"><strong><em>We are confronted with the fierce urgency of now.</em></strong></div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Coalition Duchenne has responded.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">As the founder of Coalition Duchenne and as a mother of a 19-year-old with Duchenne, there is no time to waste. Even though research has had some major breakthroughs and we are closer than ever before, there is still no cure for Duchenne. At Coalition Duchenne we believe that with more global awareness and with more funding, we will attract more research, treatments and a cure.</div><div style="color: #970f01; font-family: Arial, Helvetica, sans-serif; font-size: 19px; margin-bottom: 10px;">Now is the time for humanity to come together to save our sons.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Coalition Duchenne is about acknowledging and bringing together all the world's Duchenne muscular dystrophy organizations and individuals. But it is more than that. Coalition Duchenne is dedicated to reaching out beyond the Duchenne community and into the world. The world needs to know about Duchenne.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Duchenne is a progressive muscle wasting disease that leaves our son's minds unaffected and full of dreams. It is the most common lethal childhood genetic disease.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Duchenne affects one in 3,500 boys worldwide.It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. Duchenne affects boys and rarely girls, all over the world, from the USA to Asia, Australia, Europe, India, South America and Africa. It knows no boundaries and does not discriminate between race, culture, socioeconomic status or country.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Moving forward, we are stronger if we all come together, as humans, as a force, as a coalition, bringing everyone together.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Duchenne is a difficult road and presents many challenges along the way. It steals many things, the ability to walk, to hug, to move, and eventually to breathe. But there is that something that it can never get to, that it can never take, and that is hope.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Coalition Duchenne's logo is a lotus flower, designed by my 12-year-old daughter, Gabriella. A lotus grows out of dark muddy waters, and blossoms into a beautiful flower. The lotus symbolizes enlightenment in spite of our circumstance; it symbolizes our awakening and understanding of the oneness of us all.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Now is the time for humanity to come together. This year, together we climbed the highest peak of South-East Asia and we brought people together to raise awareness for Duchenne through Music Power. Out of diversity, we are one people, connected through love, kindness, compassion and positive energy.</div><div style="color: #970f01; font-family: Arial, Helvetica, sans-serif; font-size: 21px; margin-bottom: 10px;">Research Initiatives</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Coalition Duchenne is evaluating promising initiatives in cardiac and pulmonary research. To name just a few: FDA approved drugs such as Sildenafil, and other PDE5 inhibitors, and Spironolactone are potential adjuncts to established ace inhibitors, such as Lisinopril, and beta blockers, such as Carvidelol, to help maintain and even improve cardiac function; Stem cell research is beginning to offer potentially viable treatments although research has been focused on other patient groups; and, several other novel drugs and proteins are close to an FDA investigational new drug application.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Our track record of evaluation and funding is solid. To date, we have raised over $1 million, partly channeling the money through Parent Project Muscular Dystrophy. Independently, we funded the Dusty Brandom Fellowship at the Australian Neuromuscular Research Institute at the University of Western Australia. This helped Dr. Steve Wilton with groundbreaking work on Oligonucleotides (Exon skipping). These nucleic acid polymers are now showing promise in FDA trials. We funded another fellowship with Dr. Andrew Hoey at the University of Queensland working on cardiac research. We have also contributed significant funding to Albuterol (Spencer, UCLA) and small molecules (PPMD's Project Catalyst). We evaluated the VECTTOR system advocated by Dr. Rhodes in Texas and provided updates to the Duchenne community. Dusty Brandom has also been a long term participant in the Ataluren trial by PTC Therapeutics.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">We have worked hard to support boys with Duchenne. We share their achievements with the world through the <a href="http://www.coalitionduchenne.org/html/ourSons.html" rel="nofollow" style="color: #336699;" target="_blank">Our Sons page</a> on our website and advocate for their issues and care. In one example, we worked with a young man in Malaysia struggling with pulmonary issues and hospitalized with pneumonia. We helped his family source a Cough Assist machine and showed him how to use it on Skype. Last year he graduated with a law degree from the University of Malaysia.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">We are closely following the latest research initiatives. Web sites such as clinicaltrial.gov are excellent but broad. Treat NMD has synthesized the latest research with links to the specific clinicaltrial.gov number and <a href="http://www.treat-nmd.eu/research/clinical-research/overview-current-trials-dmd/" rel="nofollow" style="color: #336699;" target="_blank">can be found here</a>. Academic Papers relevant to the Duchenne community published in 2010 and 2011 <a href="http://scholar.google.com/scholar?as_q=duchenne+muscular+dystrophy&num=10&as_epq=&as_oq=&as_eq=&as_occt=any&as_sauthors=&as_publication=&as_ylo=2010&as_yhi=2011&as_sdt=1&as_subj=bio&as_subj=med&as_sdtf=&as_sdts=5&btnG=Search+Scholar&hl=en" style="color: #336699;" target="_blank">can be found here.</a></div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Coalition Duchenne will be announcing its next investment in Duchenne research early in 2012.</div><div style="color: #970f01; font-family: Arial, Helvetica, sans-serif; font-size: 19px; margin-bottom: 10px;">But there is more to do. We continue to respond to the call to action.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Again, with more awareness, we will attract more funding, and treatments and a cure for this disease. This gives new hope and optimism for those living with Duchenne. All money raised in 2011 by Coalition Duchenne will fund cardiac and pulmonary initiatives that will help our sons live longer lives.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">All of you are helping to raise awareness and funding to find treatments and a cure for Duchenne.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">All of us here at Coalition Duchenne hope that the entire holiday season and New Year will be filled with joy for you and your family.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Please consider making a <a href="http://www.coalitionduchenne.org/html/donation.html" rel="nofollow" style="color: #336699;" target="_blank">Christmas or New Year donation</a> to Coalition Duchenne.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">Thank you for your support, your kindness and your compassion.</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px;">With sincere gratitude,</div><div style="font-family: Arial, Helvetica, sans-serif; font-size: 15px; margin-bottom: 10px; width: 450px;"><img align="left" alt="cath signature with picture" border="0" height="253" hspace="0" src="https://c54e642647-custmedia.vresp.com/2178876134/cath-signature-with-picture.jpg" style="height: 253px; width: 450px;" title="cath signature with picture" vspace="0" width="450" /></div></td></tr>
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</span></div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com0tag:blogger.com,1999:blog-1916147149704424709.post-23876940877082535382011-12-14T21:32:00.000-08:002011-12-14T22:20:13.550-08:00What's up with GERD?<div dir="ltr" style="text-align: left;" trbidi="on"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR293F9lcVdyuGArmB5V0NA3T_QtxT7bweGmplJNoydinglBcjTxpLvAmF0I7xy2Pk77ojGukLPTPpuEBIlJT_K6xGulMuFtxlGEGvTPJSRgXmeTOWnO78sAV5k_x4Ht4-i_-m1LxnXI8/s1600/374970_2693470936776_1256618504_3007299_492170949_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR293F9lcVdyuGArmB5V0NA3T_QtxT7bweGmplJNoydinglBcjTxpLvAmF0I7xy2Pk77ojGukLPTPpuEBIlJT_K6xGulMuFtxlGEGvTPJSRgXmeTOWnO78sAV5k_x4Ht4-i_-m1LxnXI8/s320/374970_2693470936776_1256618504_3007299_492170949_n.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">American Idol winner Lee Dewyze<br />
visiting Dusty in intensive care</td></tr>
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</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">What’s up with GERD? Hydrochloric acid. That’s what’s up. What makes GERD so nauseating is the hydrochloric acid that leaks up from the stomach and into the esophagus, due to a problem with the upper stomach sphincter muscle. What makes it worse is the accompanying nauseating mucus that is produced in the esophagus as it protects its own surface against the stomach’s acids. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">This was all new to me, and especially not something I had anticipated with regards to Duchenne muscular dystrophy. GERD was certainly not something on the Duchenne radar of things to worry about. My son Dusty, who is 19 had been complaining of difficulty swallowing, and had a feeling of food being “stuck” in his throat. We were told these were common symptoms of acid reflux and were given a proton pump inhibitor, which is a small pill taken daily that suppresses acid production in the stomach. That was a year ago, and things didn’t improve. We tried to control the types of food, giving him softer or easy to swallow bland foods. But all along, Dusty was eating less, and continued having a sore throat in spite of what or when he ate. What we realized was that all along, food wasn’t the problem; it was his throat, reacting to the acid that was continually being forced up from his stomach.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">Meanwhile, the decline in cardiac and pulmonary functioning steadily continued. After all, Dusty is an older boy with Duchenne and these are the expected issues to watch for. Dusty is on the recommended heart medications, assistive breathing devices, and other standard of care treatments.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">In the last month we have had to take Dusty to the ER on three occasions, each time dealing with tachycardia (rapid heartbeat), nausea and difficulty breathing. After a total of 26 hours spent in ER, and four nights in hospital, three of them in cardiac intensive care, we stabilized the heart, stabilized his pulmonary and thought we were home free. But there was something else. Dusty just didn’t feel well. He still had nausea, and an increase in mucus that doctors were thinking was a pulmonary issue. But no. That wasn’t the case.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">That’s when I heard about GERD. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">What is GERD? And why is it happening?</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal" style="margin-bottom: 10.0pt; margin-left: 0in; margin-right: 30.0pt; margin-top: 0in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana; font-size: 11pt;">GERD is gastroesophageal reflux disease; GORD, gastrooesophageal reflux disease; gastric reflux disease, or acid reflux<b> </b></span><span style="font-family: Verdana; font-size: 11pt;">disease. It is a chronic symptom of mucosal damage (mucosa line the interior of the esophagus) caused by stomach acid coming up from the stomach and into the esophagus.</span></div><div class="MsoNormal" style="margin-bottom: 10.0pt; margin-left: 0in; margin-right: 30.0pt; margin-top: 0in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana; font-size: 11pt;">When the muscle valve in the esophagus, called the lower esophageal sphincter loosens or weakens, acid splashes up from the stomach. Normally, this valve should close tightly after eating to prevent acid from escaping. </span></div><div class="MsoNormal" style="margin-bottom: 10.0pt; margin-left: 0in; margin-right: 30.0pt; margin-top: 0in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><span style="font-family: Verdana; font-size: 11pt;">Part of the diaphragm forms an outer sphincter. In Duchenne, when the diaphragm is weaker, and because the diaphragm muscle is integral in functioning of the sphincter, the valve is permanently weakened or damaged and doesn’t work as well.</span></div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">Barrett’s esophagus is often diagnosed in those who have had long term GERD. It can be concerning because it increases the risk of esophageal cancer.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">I have also read about another kind of acid reflux, which causes respiratory and laryngeal signs and symptoms, and is called laryngopharyngeal reflux (LPR) or extraesophageal reflux disease (EERD). </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">How do you treat GERD?</span></div><div class="MsoNormal" style="margin-bottom: 10.0pt; margin-left: 0in; margin-right: 30.0pt; margin-top: 0in; mso-layout-grid-align: none; mso-pagination: none; text-autospace: none;"><br />
<span style="font-family: Verdana; font-size: 11pt;">The medications used include proton pump inhibitors, which prevent acid reflux over a period of time. These medications decrease the production of stomach acids. Some proton pump inhibitors can help to heal the esophageal lining, which may have become damaged from persistent acid reflux. Other treatments include surgery that helps strengthen the sphincter.</span> </div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">For now, the doctors have Dusty on double the dose of the proton pump inhibitor. In the last month Dusty has been unable to eat solid food. Fortunately he is able to tolerate and supplement his diet with nutritional drinks. In a few weeks there will be a re assessment of any change or improvement to GERD. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">Going back to our visits to the ER prior to the GERD diversion, the swing of emotions was intense. Having cardiac issues is serious enough, and watching Dusty’s heart maintain at 200 beats a minute for two hours was frightening. His body literally vibrated in time to the beats. In the ER, it was difficult watching him struggle with nausea, difficulty breathing and feeling unwell. I made sure I kept my mind present with the task at hand and stopped myself drifting into the “what ifs” and the fact that the Duchenne community had recently lost many young boys/men to Duchenne. My mind struggled with this as I helped Dusty’s frail body sit up to cough. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">The word got around fast that Dusty was in hospital, mainly due to a facebook post I had made while waiting in the ER. The response was tremendous. Literally hundreds of messages came pouring through from all over the world. I read through the flurry of messages as each came through on my cell phone, and read each one out to Dusty. I was moved and touched by the outpouring of thoughts and prayers and messages of support, some from people I hardly knew. The messages were comforting. I felt the arms of humanity around me and the oneness of us all.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">People have been inspired by the journey of Duchenne that so many of us are on. Our stories are told again and again, inspiring stories of our young sons and their families who know what it means to literally make the best of everyday. Through this journey I have met the most kind and caring people. Living with Duchenne can bring out the best in people whether they are on the journey themselves or not.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">Yes, it is a harsh disease. Our hearts break together. In this way the Duchenne community is close. Somewhere in between the ups and downs of the cruel reality of this disease, we find life’s rainbow, the subtle, unexpected beauty that appears when we are not looking for it.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">Dusty is still unwell, and he will need to wait out the proton pump inhibitor to work. It can take weeks. For now, he prefers to sit in a dim lit room to help with his nausea, close to an assistive cough-machine that helps to clear the mucus caused by the acid in the esophagus. For the moment we won’t be going on our daily walks, or flying his remote-control planes. Instead we will hang quietly and patiently indoors for this to pass. When I look into his blue eyes, my mind stops racing and worrying, and I feel a sense of calmness and ease. It is moments like these, and there are many, when all is good.</span></div><div class="MsoNormal"><br />
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</div><div class="MsoNormal"><span style="font-family: Verdana; font-size: 11pt;">Please check out <a href="http://coalitionduchenne.org/">http://coalitionduchenne.org</a></span></div><div class="MsoNormal"><br />
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<h3 class="post-title entry-title" style="font: normal normal normal 30px/normal Verdana, Geneva, sans-serif; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; position: relative;"><a href="http://www.active.com/donate/duchenneexpedition" style="color: #cc3300; text-decoration: none;">Climbing Mt Kinabalu, Summit of Borneo</a></h3><div class="post-header" style="color: #997755; line-height: 1.6; margin-bottom: 1em; margin-left: 0px; margin-right: 0px; margin-top: 0px;"><div class="post-header-line-1"></div></div><div class="post-body entry-content" id="post-body-1235043954373366764" style="font-size: 14px; line-height: 1.5; position: relative; width: 518px;"><div style="background-color: white; color: black; font-family: arial; font-size: 10pt;"><br />
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<center><span class="Apple-style-span" style="color: #970f01; font-family: Arial; font-size: 19px; font-weight: bold;"><a href="http://www.coalitionduchenne.org/" style="color: black; font-family: Arial, Helvetica, sans-serif; font-size: 10pt; font-weight: normal; text-decoration: none;"><img border="0" height="152" src="http://www.active.com/images/upimages/ExpeditionLogo.JPG" style="-webkit-box-shadow: rgba(0, 0, 0, 0.496094) 1px 1px 5px; background-attachment: initial; background-clip: initial; background-color: white; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-style: none; border-color: initial; border-left-style: none; border-right-style: none; border-top-style: none; border-width: initial; box-shadow: rgba(0, 0, 0, 0.496094) 1px 1px 5px; padding-bottom: 8px; padding-left: 8px; padding-right: 8px; padding-top: 8px; position: relative;" width="400" /></a></span></center><center><br />
</center><center><a href="http://www.active.com/donate/duchenneexpedition" style="color: #cc3300; text-decoration: none;">http://www.active.com/donate/duchenneexpedition</a></center><center><br />
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<tr><td align="center" class="don_title" style="color: #970f01; font-family: Arial; font-size: 14pt; font-weight: bold;">Expedition Mt Kinabalu</td></tr>
<tr><td align="CENTER" class="don_header" style="color: black; font-family: Arial; font-size: 12pt; font-weight: bold; text-align: center;"><em>Climbing for a Cure</em></td></tr>
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<tr><td class="don_welcome" style="color: black; font-family: Verdana; font-size: 10pt;">Welcome to Expedition Mt Kinabalu! On September 9th, I will be part of a team of 30 international climbers who will scale Mt Kinabalu, summit of Borneo, to raise global awareness and funding for Duchenne muscular dystrophy.<br />
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<div style="color: black; font-family: Verdana; font-size: 10pt;">Duchenne is a fatal, progressive muscle wasting disease that affects one in 3,500 boys worldwide. It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. It leaves their minds unaffected and full of dreams.</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;">This is a personal quest. I will be climbing for my 18-yr-old son Dusty who has Duchenne, and for all the thousands of boys who are faced with the challenges of this disease everyday.</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;">All money raised will go directly to funding promising research that will extend lives and find a cure for Duchenne.</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><b>Please sponsor me by clicking on the link below, and help change the future of all the boys with Duchenne.</b></div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><span class="Apple-style-span" style="font-family: arial;"><a href="http://www.active.com/donate/duchenneexpedition" style="color: #cc3300; text-decoration: none;">http://www.active.com/donate/duchenneexpedition</a></span></div><div><span class="Apple-style-span" style="font-family: arial;"><br />
</span></div><div style="color: black; font-family: Verdana; font-size: 10pt;">With sincere gratitude,</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
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Cath Jayasuriya</div></td></tr>
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</center></div></div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-52211665127352611732011-07-23T23:02:00.000-07:002011-12-20T18:10:27.384-08:00Meeting President Barack Obama<div dir="ltr" style="text-align: left;" trbidi="on"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">My son with President Barack Obama in the Oval Office</td></tr>
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</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Three years ago, the Make-A-Wish foundation, an organization that grants wishes for terminally ill children, came to our home to ask our then 15 year-old son who has Duchenne muscular dystrophy, what his most special wish was. It was just after the exciting campaign and election of President Barack Obama.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">My son’s wish was to meet the newly elected president in the White House. We were told that it may take a few years, and they suggested that if he didn’t want to wait that long, he could request a different wish at any time. My son said that he would rather wait for the wish to come true.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Now, three years later, out of the blue I got a call advising me that my son’s (now age 18) wish had come through. I was told that in two weeks my family and I were to be flown to Washington DC, to the White House, to meet the President!<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">There was much confidentiality surrounding the visit, and although I was permitted to share the news with close friends and family, I was asked not to put anything out publicly on social networks such as Facebook. I immediately called my parents in Malaysia to tell them the exciting news. They were thrilled with the fact that their grandson had an appointment with the President. The news spread, and before we knew it friends and family from all over the world were sharing our excitement.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The timing was perfect. My son’s health was stable. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">After selecting gifts and items we wanted signed by the president, there were many emails back and forth requesting personal information about my son for the president to know such as his interests and hobbies. We put the information together in a personal email for the president to read. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The days went by quickly, and before we knew it we were en route to Washington DC. Once there we were told that the very next day we were expected at the White House. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I reminded my children to be present and mindful of everything that was to happen that day, and they also reminded me. Throughout the hustle and bustle of getting organized and ready, my mind was calm and open. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">On the day of the visit, as we drove along the streets of Washington DC, I caught glimpses of the Capitol and the Washington Monument through the trees and the sparkling sunlight as I looked out through the window of our vehicle. I thought of the many notable people who had shared this route on their way to the White House. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We arrived at the East Wing entrance. Security was tight but they were expecting us, and the gates opened swiftly as our convoy was waved on through.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I watched my son drive his wheelchair out of the disabled van, with his contagious smile and lively blue eyes reflecting a clear blue sky. He looked stylish with his casual blond hair, his carefully selected new pressed shirt and dark blue pants, blue tie and new black shoes. He was so vibrant and I was in awe of him. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The secret service was there to greet us, and escorted us through the East Wing entrance of the White House. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Our private tour took us though grand rooms and corridors so full of history. Every now and again we saw the view outside from within, a view few people see. Formal portraits of past presidents and first ladies flanked the corridors, methodically placed amongst the casual family photographs of the past first families. Pondering over some of the portraits I recalled the events of that time. As I started remembering historical facts, my son reminded me to be present.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The carefree mood of the East Wing, where we met Bo the President’s dog and ventured out into the beautifully manicured Jacqueline Kennedy Garden, where my son rode in the president’s private elevator and then relaxed in the President’s private movie theatre, suddenly changed as we approached the West Wing. The secret service started to appear and I knew then that the moment had come. The moment we had all been waiting for.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">We waited for a few minutes before we were escorted along the West Wing corridor past the Rose Garden. Here we entered through the West Wing doors and were asked to leave our cameras and cell phones on a table. We were advised to wait a few minutes for the president to wrap up a meeting. Within the next few minutes it was quite a surprise to see Hilary Clinton appear from a side door. As we greeted her, it was then that I realized we were going to meet the president in the Oval office. It was our turn next. At that moment I felt the adrenaline kick in and I was trembling both with excitement and nervousness.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Suddenly, through a corridor before us, a double door opened releasing the mid afternoon sunlight of the Oval Office. A tall man stood before us with the light streaming behind him. It was the President. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">His familiar voice called out, “Hi Dusty. Come on in. I’ve heard all about you!”<o:p></o:p></span></div><div class="MsoNormal"><br />
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</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">President Obama walked towards us in his relaxed fashion. He reached out and placed his hand gently on my son’s hand, the other on his shoulder. The President humbly thanked my son for coming to visit. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The President showed us into the Oval Office and closed the door. For the next 20 minutes we had a dynamic conversation ranging from his interest and concern for the seriousness of my son’s condition, to the outbursts of laughter when he attempted to play the sompotom, a small traditional musical instrument we brought him from Borneo. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">When he asked us what we had planned for the summer, my son proudly told him about our Expedition Mt Kinabalu climb to raise global awareness for Duchenne. The President jokingly said he would love to come and that he wanted to hear all about it. He shared with us his passion for traveling to exotic places. He was interested in my cultural heritage as he broused through a book we gave him about Borneo. He asked how my parents had met as he stopped to look closely at an image of Mt Kinabalu. He had questions for all of us, as we did for him, and with great care and deliberation, he always brought it back to being about my son.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The President was genuine, warm, friendly and compassionate. It was an incredible experience to be in the presence of an individual who has inspired not just my son and me, but also the world. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As I took in the moment, I noticed the few selected pictures on the wall of the Oval office, the grandfather clock in the corner, the secret door that had been painted to look like part of the wall, the old style telephones on the desk and the carved eagle on the ceiling. I smiled as I glanced at the assortment of happy family pictures on a small table in front of the window. So much history had happened within these walls. As the chief white house photographer continued clicking away, I realized that we too were part of its history. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I thought of the many influential world leaders who had met here, the discussions and the decisions that impacted the world. I looked over at the President deeply engaged in a conversation with my son. It was a moment I will always remember.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I was able to personally thank the President for being a voice of hope and inspiration to me. As we said our goodbyes, the President commended my son on his hard work, and wished us the very best of luck for the climb. He showered my three children with gifts. For my son, it wasn’t the White House M&M’s, or the specially designed box of caramels or the signed engraved coins that he wanted to hold onto, but it was a miniature copy of the US Constitution that at the last minute, the President took from a different drawer, signed and placed in his hand.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">After a long goodbye, we walked out of the Oval Office. I glanced behind and smiled once more at the President. He winked back. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I know that this September 9th, as I climb Mt Kinabalu for my son and for all those with Duchenne, I will reflect on my visit, and on some of the words from the President’s past speeches. The fact is we are all one people, we can repair this world, and there is nothing false about hope. Although the battle ahead may be long...Yes We Can!<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
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</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Please check out my May blog about Preparing to Meet The President. </span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br />
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</div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com10tag:blogger.com,1999:blog-1916147149704424709.post-12350439543733667642011-07-09T11:45:00.000-07:002011-07-09T11:48:47.872-07:00Climbing Mt Kinabalu, Summit of Borneo<div style="background-color: white; color: black; font-family: arial; font-size: 10pt;"><br />
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<center><span class="Apple-style-span" style="color: #970f01; font-family: Arial; font-size: 19px; font-weight: bold;"><a href="http://www.coalitionduchenne.org/" style="color: black; font-family: Arial, Helvetica, sans-serif; font-size: 10pt; font-weight: normal; text-decoration: none;"><img border="0" height="152" src="http://www.active.com/images/upimages/ExpeditionLogo.JPG" width="400" /></a></span></center><center><br />
</center><center><a href="http://www.active.com/donate/duchenneexpedition">http://www.active.com/donate/duchenneexpedition</a></center><center><br />
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<tr><td align="CENTER" class="don_header" style="color: black; font-family: Arial; font-size: 12pt; font-weight: bold; text-align: center;"><em>Climbing for a Cure</em></td></tr>
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<tr><td class="don_welcome" style="color: black; font-family: Verdana; font-size: 10pt;">Welcome to Expedition Mt Kinabalu! On September 9th, I will be part of a team of 30 international climbers who will scale Mt Kinabalu, summit of Borneo, to raise global awareness and funding for Duchenne muscular dystrophy.<br />
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<div style="color: black; font-family: Verdana; font-size: 10pt;">Duchenne is a fatal, progressive muscle wasting disease that affects one in 3,500 boys worldwide. It robs boys of their ability to walk, breathe, eat and speak, and eventually takes their lives, often before they reach age 20. It leaves their minds unaffected and full of dreams.</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;">This is a personal quest. I will be climbing for my 18-yr-old son Dusty who has Duchenne, and for all the thousands of boys who are faced with the challenges of this disease everyday.</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;">All money raised will go directly to funding promising research that will extend lives and find a cure for Duchenne.</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><b>Please sponsor me by clicking on the link below, and help change the future of all the boys with Duchenne.</b></div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><span class="Apple-style-span" style="font-family: arial;"><a href="http://www.active.com/donate/duchenneexpedition">http://www.active.com/donate/duchenneexpedition</a></span></div><div><span class="Apple-style-span" style="font-family: arial;"><br />
</span></div><div style="color: black; font-family: Verdana; font-size: 10pt;">With sincere gratitude,</div><div style="color: black; font-family: Verdana; font-size: 10pt;"><br />
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Cath Jayasuriya</div></td></tr>
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</center></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-16146221766472206452011-05-31T20:02:00.003-07:002011-12-20T18:09:18.303-08:00Preparing To Meet The President<div dir="ltr" style="text-align: left;" trbidi="on"><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;">Senator Obama in 2008</td></tr>
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<div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">It has been an extraordinary 10 days, 10 days I wish would never end. Everything went right, everything fell into place. My son’s wish to meet the President through the Make-A-Wish Foundation had come through. It seemed so unreal the fact that next week, we were headed to the White House for a private meeting with President Barack Obama. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">My busy week began getting in the way of the fleeting moments I had day dreaming about meeting the President, dreaming of being in his presence and the conversation I was going to have with him. With only three days until we were to leave, I began to realize that I had to leave my to-do list behind, and to really be in the present moment. After all, it was for only three more days that I could say, “I have an appointment with the President.”<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I wanted the days to go slowly, to delay the gratification of meeting someone who has truly had an impact on my life, with his inspiring words of hope, with his powerful speeches, and the way he conducts himself during interviews, his non reactive answers, his calmness, his friendliness, his intelligence. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">How does one prepare to meet President Barack Obama?<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I began looking over the piles of transcripts of his speeches I had kept from his presidency campaign three years ago, marked up by a scattering of my yellow highlighter across the pages. It was his message of hope, hope in the face of difficulty, hope in the face of adversity, choosing hope over fear, that inspired me the most. It was hope he had given me as a mother on my journey with my son suffering from Duchenne.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I identified with his message, ours being the generation that stood for change, compassion for each other, marching straight forward with courage and purpose. It was a powerful message.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I went up to the bookstore with my daughter to buy a new copy of</span><i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"> Dreams of My Father</span></i><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">, that I would ask him to sign. When I read his book sometime ago, I saw parallels with my own life. Like myself, Obama had a mixed heritage, and had also experienced living in different countries. Whilst he spent his childhood in Indonesia, I spent mine in neighboring Malaysia, just across the water. Obama also had a pet ape when he was a child and so did I.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Like myself, when he was younger, Obama also experienced confusion in identifying with a race or culture, which is often the case with children from multi-racial parents. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I pondered over questions I would ask him, and advice I would seek. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As I self reflected, I thought about my three children, the impact this visit will have on their lives. I thought about my son, whose wish it was. I thought about the moment the President would reach out to shake my son’s hand, only to realize that my son is too weak to lift it. At that moment I know there will be a connection. We will connect on a personal level with the President, as a parent, as a father, as a brother.<o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">This is a private visit but in a way it is also official. My son is meeting the President, not only as a fun 18-year-old who loves science and computers, but also as an ambassador for Duchenne. <o:p></o:p></span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The President will know all about the seriousness and the devastation of Duchenne, and this may make a difference. </span><o:p></o:p><br />
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</span></div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com7tag:blogger.com,1999:blog-1916147149704424709.post-75097569718185747502011-05-12T10:44:00.000-07:002011-05-13T13:21:21.479-07:00Mount Kinabalu: A Silent Witness<div dir="ltr" style="text-align: left;" trbidi="on"><br />
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<span style="font-family: Verdana;">I was born to a Malaysian father and an English mother. More specifically, my father is part Sri Lankan and part Kadazan. The Kadazans are the largest group of indigenous people of Sabah, in Malaysian North Borneo. My parents met when my father won a scholarship to study law in England in the 1950’s. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">I am fortunate to have lived my childhood in Sabah. I was raised in the then small town of Kota Kinabalu. In the 1960’s, KK and its surrounding area were largely undeveloped and I spent my childhood running around on the beaches, the islands and hills, and exploring the rivers and untouched rainforests. It was an idyllic setting. I was growing up and living in an adventurous and exotic place. To me it was paradise.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">As a child, what fascinated me the most was Mount Kinabalu, a tower of granite that rises majestically 13,455 ft above the surrounding countryside. Mount Kinabalu has been a silent reminder of time passing. The mountain was like a loyal friend in my life, constant and unchanging. It was witness to all that was happening. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">Mount Kinabalu is an isolated batholith, created 15 million years ago. It boasts being the highest mountain between the Himalayas and Irian Jaya, Indonesia. Mount. Kinabalu has attracted the attention of botanists since 1894 because of its diverse flora. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">The word Kinabalu comes from the Kadazan word Aki Nabalu, “revered place of the dead”. The mountain is sacred to the Kadazans. They believe that spirits of their ancestors inhabit the top of the mountain. Many Kadazans still live in small villages or kampongs on the flanks of Mount Kinabalu.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">In my childhood days, it was a slow nine-hour drive to the mountain and the park headquarters, along a winding, treacherous dirt road that created havoc for vehicles during the rainy season. I remember one time that our four-wheel drive had to be towed up a slippery, muddy hill by a steamroller. Today it is a fast hour and a half drive.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">At age 11, I was sent to boarding school in the West. Over the years I would return for holidays, and KK changed dramatically. The rainforests began to vanish, the dirt roads were replaced by modern roads, the clear flowing rivers silted up as development made way for modern buildings, more roads and the arrival of tourism. </span></div><div class="MsoNormal"><span style="font-family: Verdana;">.</span></div><div class="MsoNormal"><span style="font-family: Verdana;">Not only did I stand in the worlds of East and West but also those of old and new. Mount Kinabalu was a witness to all these changes. On each return I contemplated the magnificence of the mountain, strong and undefeated. And I decided that I too would stand strong and undefeated. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">No matter where I was, whether I was out on my favorite island Mamutik, lying on my thinking rock, surrounded by tranquil waters, or watching from my home, seeing the dark rain clouds clear and unveil the mountain after a raucous tropical storm, it was impossible to escape Mount Kinabalu’s magnificent presence. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">Mount Kinabalu became a symbol for my life. The mountain watched over as the years passed. Like an anchor, the mountain reminded me where I was from and kept on drawing me back, guiding me through some difficult years while I was away from home. Every time I left to go back to boarding school, I would look at the mountain one last time and blink it into my memory. Mount Kinabalu stood for wisdom. It spoke to me of strength and endurance. Throughout life’s ups and downs the mountain remained the same, and so did a certain part of me. It reminded me that despite the changes that life brings, there are fundamental things that always stay the same. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">Although I have lived in many countries, I still call Sabah home. Despite the changes, when I visit I can still feel the old KK that I knew as a child. It is the remnants of old buildings and roads that conjure up memories of a much simpler life.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">In a few months, I’m coming home to Sabah with my 18-year-old son, to lead an international expedition to climb Mount Kinabalu. It is a personal quest. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">I will be climbing to raise global awareness for a little known disease called Duchenne muscular dystrophy. It happens to be the most common devastating genetic childhood disease and affects 1 in 3,500 boys worldwide. Boys and young men with Duchenne, face progressive muscle wasting that robs them of their ability to walk, breathe, eat and speak and eventually takes their lives often before they reach the age of 20. It leaves their minds unaffected and full of dreams. Duchenne occurs across all races, cultures and countries. </span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="font-family: Verdana;">My son will not be joining me on this climb. Just after dawn before the morning clouds hide Mount Kinabalu behind a heavy cloak of mist, my son will watch from his wheelchair, as 30 climbers from around the world take on the slopes of Mount Kinabalu, to climb in honor of him and all boys and young men who suffer from Duchenne.</span></div><div class="MsoNormal"><br />
</div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com4tag:blogger.com,1999:blog-1916147149704424709.post-66000983921613624012011-02-20T23:16:00.000-08:002011-02-20T23:24:31.302-08:00Learning from Ants<div dir="ltr" style="text-align: left;" trbidi="on"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO0iwyQAwrltvx_xjjGuWrE0FN0LBfpgAGi0cCKcRqX6KQLw84vW-FzA5iXxGdsED3yShs4IIBN4UnWPBXtBS314izU7pS_VZJxF1UBnrmAf3pzd7VpL6CfloqiXLZw4jCKLgF6x14cQY/s1600/leafcutter-ants-in-the-forest.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO0iwyQAwrltvx_xjjGuWrE0FN0LBfpgAGi0cCKcRqX6KQLw84vW-FzA5iXxGdsED3yShs4IIBN4UnWPBXtBS314izU7pS_VZJxF1UBnrmAf3pzd7VpL6CfloqiXLZw4jCKLgF6x14cQY/s320/leafcutter-ants-in-the-forest.jpg" width="320" /></a></div><br />
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</style> </div><div class="MsoNormal"><span style="font-size: large;">It is not that our circumstances define who we are but it is rather about how we define our circumstances.</span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">When ants are presented with an obstacle, such as a clump of soil or a rock, they will move around it, climb over and even under it. What they don’t do is give up.</span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">A year ago I was traveling in Costa Rica for a week. It is a tropical paradise, not unlike my home of Borneo. Being on the same line of latitude as Borneo at times I felt I was home, from the short bursts of rain showers throughout the day to the warm comforting rays of the sun, caressing my body as I walked along the beaches. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">Costa Rica is vibrantly rich, with its abundant flowers and trees, unique wild life, inviting waters and happy people. While the country has only about 0.25 percent of the of the world’s landmass, it contains five percent of the world’s biodiversity. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">I spent most of my time on the west coast, in Costa Rica’s smallest national park. One morning, after a walk along the beach, I took the undulating path back through the rainforest to the road, a 15-minute stroll. As I gazed up at the trees listening to the alarming sounds of the howler monkeys, and hoping to see one, something on a tree branch caught my attention. In Costa Rica there is an interesting family of ants called the leaf cutter ants. And there they were, hundreds of large ants carrying even larger pieces of cut leaves, in a frenzied parade along the tree branches. I stopped to follow their path with my eyes, as they descended almost military-like, marching straight down the huge tree trunks and along the ground. I had not seen or heard about leaf cutter ants before, so I was quite intrigued. I started to follow them for several minutes. Eventually, they started to disappear into a hole in the ground, their home, where the leaves are chewed but not eaten, and stored for food. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">As I crouched down observing the ants, I noticed a small stream right in their path. What amazed me was that they had found a way to get across, a small branch provided a bridge. These ants were never going to quit. When the ants came across an obstacle, they would go left or right of it, go over or under, or even move it. The ants confronted their obstacles. They were just ants. They were not defined by their struggle. They just got on with it.</span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">I stood up and started back on the path. It is not that the path is always easy. It won’t be. Life won’t always be easy. Our circumstances may present us with difficulties, not just obstacles in our way but sometimes mountains. But that is not what defines us. The way we see our obstacles reveal who we are. Instead of seeing obstacles as difficult or negative, we can see them as opportunities for growth, for love, for compassion. This defines who we are. Mountains can potentially stop us. If we can’t go around them or move them, we may have to climb them. </span></div><div class="MsoNormal"><br />
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</div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com0tag:blogger.com,1999:blog-1916147149704424709.post-53667656577971664122011-01-31T22:05:00.002-08:002022-08-30T14:24:34.547-07:00My Father and My Son<div dir="ltr" style="text-align: left;" trbidi="on"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjngY_tSu1gfYkveDy4XgGb8-vu7inxI7P4oTRnEtxTPHSZuE0Qa2s1Ulryk_gigseF6OrBhC0FTMcS93OTs0452BM31UwnjSlj3v-sbZCtdU3cPKNjGjyCbJ4tXTGUHtmoj8hBNYXlTy0/s1600/DSCN0086.JPG" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjngY_tSu1gfYkveDy4XgGb8-vu7inxI7P4oTRnEtxTPHSZuE0Qa2s1Ulryk_gigseF6OrBhC0FTMcS93OTs0452BM31UwnjSlj3v-sbZCtdU3cPKNjGjyCbJ4tXTGUHtmoj8hBNYXlTy0/s320/DSCN0086.JPG" width="273" /></a></div><br />
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</div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>My father turns 85 this year. Every year he, (with my mother), makes the long plane trip from Malaysia to California, to spend a fun-filled Christmas and New Year with us. It had been six weeks ago that we anticipated his arrival, thinking of all the great things we were going to do, and the great things we were going to ask him.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>During the past six weeks, my father was once again absorbed into the world of Duchenne, as he watched with interest, fully engaged, the goings on in the home, particularly between his three grandchildren, the way they interact, and the love and devotion that is evident between them. My father is not surprised by the absence of sibling rivalry or jealousy. It just does not exist and never has between them. Instead, he is witness to the extraordinary level of acceptance, patience and compassion the two younger grandchildren have for their brother Dusty.<br /></span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>Some evenings my father would sit by Dusty and massage and stretch out the tendons on his fragile, stiff hands. Other times, he would try and comprehend the complex orthotic new seating system that my son has which helps him sit comfortably whilst accommodating a contorted scoliosis. </span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>But this evening was different. It was the one thing we had talked about doing and hadn’t. We had an hour before my father was to leave for the airport. The tripod was set up and the video camera attached. We announced to my father our request to interview him. </span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>As I sat behind the camera, I asked my father if he could share with us something about his life at the ages of 11, 16 and 18, the ages of his grandchildren. </span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>We were suddenly transported into the jungles of North Borneo during the late 1930’s and early 1940’s. My father fondly speaks of a blissful childhood before the war was declared. My father was 15 at the beginning of the Japanese Occupation, and as a result of the war, the schools were closed. My father started helping out at the timber camp which his father managed, and where his family stayed. He remembers hunting for deer and wild boar in the virgin rainforest. </span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>My father tells of the day when two Japanese soldiers came to the timber camp requesting of his father some help with a possible recruitment. It would be the last time he would see his father. It was a trick played by the Japanese and instead, his father was imprisoned, falsely believed to be a spy for the British.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>During that time, after relocating his mother, brothers and sisters from Sandakan to Jesselton, (300 miles away by boat), my father became a trader, walking from town to town bartering rice, bananas, salt and tobacco. There was no road, so he would walk along the railway track with his goods, from Limbanak to Beaufort, 60 miles away and an 18 hour walk. One time he remembers coming across a derailed train. There were many casualties. He remembers frantically looking for his mother, walking through the carriages, thinking she was on the train. Luckily she wasn’t.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>It was during that time that the allied forces conducted missions to end the war. My father was 19 when he was recruited as an interpreter for the Australian 2/28<sup>th</sup> Battalion, part of the 9<sup>th</sup> Division, who came to liberate North Borneo. He said that they gave him a uniform, and he gestured to his head as he remembers wearing the characteristic wide brimmed slouch hat with a chinstrap.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>As well as digging trenches, my father was also armed. He recalls his friend Snowy, a young Australian who was shot and killed. Being all around the same age, he had formed a bond with the men. My father said there was no time to contemplate death, and they had to bury the dead and get on with the task at hand.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>Dusty had started to engage my father in the questions. He was in admiration of his grandfather. His grandfather had not only dodged bullets, but bombs too. He saw his grandfather as a deeply caring man, who helped his family as much as he could, even carrying one of his older sisters half a mile to the trenches, daily, during the bombings. Suddenly, the special bond my father had with his siblings was understood in a different light.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>As I listened to and watched the conversation between them, I saw how they were both in awe of each other. Something stuck me as similar. Despite their different ages and circumstances, and despite different battles, Dusty with the challenges of Duchenne and my father with his own challenges with various ailments that cause him pain, there was something the same. It was resilience of the human spirit. It was courage. Both have the same determination, the same strength and resolve. Neither complains of their suffering. There is a peace, that despite what my father endured, and what my son endures, they are men of character.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>It was suddenly time for my father to leave, for his long plane trip back to Malaysia. It was a moment to remember. I stood watching my father hug his grandson goodbye in the darkness.</span></span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><br />
</span></span></div><div class="MsoNormal"><span style="font-family: arial;"><span style="font-size: medium;"><span>And there I was, in the presence of the two most brave and courageous men I know, my father and my son.</span></span></span></div><div class="MsoNormal"><br />
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</div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com7tag:blogger.com,1999:blog-1916147149704424709.post-36102109328313309692010-12-18T11:00:00.000-08:002011-02-20T23:28:03.953-08:00Another Brick in The Wall<div dir="ltr" style="text-align: left;" trbidi="on"><div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS2VV7PTp9XVVpZK6aSm_qfQEPcGz4QYt4WuNTgF8TLiMI-7YZZ0yg8vqQgJxvrSwBB8RJA2LXJ1CNcDD2DlOvxhYQ7BAkFE4W3vHXsqB0pqqp7LCMelFT3-uS9hMOALiS3iOjDmiIgrI/s1600/IMG_1829.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS2VV7PTp9XVVpZK6aSm_qfQEPcGz4QYt4WuNTgF8TLiMI-7YZZ0yg8vqQgJxvrSwBB8RJA2LXJ1CNcDD2DlOvxhYQ7BAkFE4W3vHXsqB0pqqp7LCMelFT3-uS9hMOALiS3iOjDmiIgrI/s320/IMG_1829.jpg" width="240" /></a></div><style>
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</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Within seconds of being led to our seats, the stadium erupted into cheers as Pink Floyd bassist Roger Waters walked onto the stage. As I found my seat in the first row, the loud cracking sounds of fireworks rocked the stage from side to side, and the heat and intense brightness forced me to shield my face with my hands. It looked like the stage had exploded. The legendary rock star took center stage and raised both arms in the air and the crowd again burst into cheers and screams. It was an incredible feeling to be part of this energy. </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">The lights dimmed as Waters was handed his bass guitar. Suddenly, from the gigantic speakers, the ominous sound of helicopters emerged, their deafening rotor blades vibrating through the crowd, so realistic, as if hovering right above us, casting bright, menacing searchlights upon the audience. In the background a telephone started ringing, and ringing, hopelessly. The crowd roared as the familiar guitar rift began, and became the opening song for the night, their most famous, <i>Another Brick in The Wall.</i></span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Naturally, I went back in time to when I was 16 years old when the song was first released. As children appeared on the stage for the chorus, I found myself, fist clenched and held high, singing as loudly as I could:</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">We don’t need no education, </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">We don’t need no thought control, </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">No dark sarcasm in the classroom, </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Teacher, leave them kids alone…</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Of course, the song took me back to some of my dark and desperate boarding school years in England, from the ages of 11 to 17 years old. Back then the song was like an anthem to me. I was attending a boarding school that was void of anything that was love and kindness. I was 7,500 miles away from my home and family in Malaysia. In those days, we didn’t have the luxury of international calls. I went for months without speaking to my parents and family, and often wondered if they were all still alive. I used to wait desperately for letters to come in the mail from my mother. My father rarely wrote, just the odd postcard from his business trips. The telephone ringing reminded me of the deep anguish that I felt, thinking that even if I could call home, what if no one answered? It was uncanny how close those memories were still to me at that moment.</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">The show had started with the band in full view and with each song a wall of cardboard bricks was gradually being built between the band and the audience, allowing only a few gaps for the crowd to see through. By the second half of the show a complete wall stood, 40 feet high, separating the audience from the band performing. </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">I attended a convent in the English countryside that was run by Canadian catholic nuns. As I sang the words I remembered how harsh and uncaring the teaching nuns were to us. I was reminded of the unwelcoming, depressing conditions of the boarding house, which we would come back to after a day of school, and the coldness of the nuns who ran it. The nuns were trusted to act as our surrogate parents, our mentors, supposed to be responsible to care for us with love, compassion, encouragement and kindness. Instead, a dark and vacant side of human nature was revealed, where our essential worth as children was undermined and damaged. The way we were all treated and the injustices imposed upon us forced me into being rebellious and antiestablishment during my youth.</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Waters was against the injustices that he experienced in boarding school himself, which was formal, controlling and rigid. It was a system that forced kids to loose their individuality and to conform. <i>Another Brick in The Wall</i> became a symbolic song against power over an individual, whether it be education, government or religion. </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Waters originally thought up the concept of building a wall across the stage to express the feelings of alienation he felt from the audience. Eventually, the wall not only symbolized the separation of the band from the audience but also separation between east and west, rich and poor, black and white, powerful and weak.</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">To me, the bricks in the wall are like obstacles. They mount up and become walls that separate us from one another. My experiences collected from boarding school have molded me into who I am today, and especially the kind of mother I wanted to be for my children. I am to my children what was missing from my formative years.</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">A kaleidoscope of colors and fast images were projected onto the wall as the band, who had temporarily reassembled in front of it, quickly cleared the stage. It was toward the middle of the second half when security asked all of us in the front row to stand back. Waters, standing on a raised platform, took on the persona of a fascist dictator performing at concerts similar to neo-Nazi rallies, and ordered and aroused the crowd as everyone chanted:</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Tear down the wall, </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Tear down the wall, </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Tear down the wall...</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">The wall, drenched in colors of red and orange, began crumbling from the top, accompanied by sounds of explosions, and dramatically, the whole wall fell to the ground with pieces of cardboard strewn about like wreckage all over the stage and floor. Stage handlers who were shielding the first row from being hit quickly maneuvered the pieces to the sides of the stage. The tearing down of the wall felt historical.</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">Waters came out onto the stage for the last time, a personable and softly spoken, gentle man, choosing his words carefully and meaningfully, he thanked his fans, and talked about his journey and how he had changed over the last 30 years. I reflected too, upon my own journey and how I have changed. </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">I reflected on how I battled through all the bricks in my own wall, particularly the emotional trauma of my boarding school years. Having those days now safely behind me, I have stumbled upon my most challenging of all obstacles, that being the diagnosis of my own child with Duchenne muscular dystrophy. I share the same hope for my son that Waters had that evening, as he spoke about the oneness of people, and the need for us all to break down the walls that differentiate and separate. </span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span style="font-size: large;">As the charged crowd stood clapping, again the stadium erupted into cheers as Pink Floyd bassist Roger Waters walked off the stage, ending his last performance ever in the United States. </span><br />
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</div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com2tag:blogger.com,1999:blog-1916147149704424709.post-18902569888004515062010-12-04T00:29:00.000-08:002010-12-18T11:08:37.128-08:00Boy With The Blue Guitar<style>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNFlJiFySoksgD9kPWQGK2ICkrwcdxDb06QR1Tk9jLRQBcbBmNt8QfIRb-rXUZzuALMMxf7CY5u7vC4PyTt7XCf-N8qtzmLZEndWPNAxfG9y6Xaws19tJDI1zsi2mv2omOihBMrlZwIO4/s1600/025.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiNFlJiFySoksgD9kPWQGK2ICkrwcdxDb06QR1Tk9jLRQBcbBmNt8QfIRb-rXUZzuALMMxf7CY5u7vC4PyTt7XCf-N8qtzmLZEndWPNAxfG9y6Xaws19tJDI1zsi2mv2omOihBMrlZwIO4/s400/025.JPG" width="266" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>November 2002</b></td></tr>
</tbody></table><div style="font-family: Verdana,sans-serif; text-align: left;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">(I wrote this song a few years ago when my son Dusty could still play the guitar. Today, just holding a spoon to feed himself is heavy for him).</span></span></div><div style="font-family: Verdana,sans-serif; text-align: left;"><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span"><br />
</span></span></div></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><div style="text-align: left;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">I can hold a thousand grains of sand inside my hand</span></span></b></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Why are all my crazy thoughts so hard to understand</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">I would walk ten thousand miles in the pouring rain</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Just to see you smiling once again</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span"><br />
</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span style="font-size: small;"><span class="Apple-style-span"><span class="Apple-style-span">Chorus</span></span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">It’s funny how the real things are always about love</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">The answers are within ourselves, not in the stars above</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Just ask the boy with the blue guitar</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Just ask the boy with the blues guitar</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span"><br />
</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">I can see a thousand stars when you’re lying by my side</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Nothing really matters here when there’s nothing left to hide</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Confused by all those city streets reaching out to escape the haze</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Melancholy surrenders to the sunset’s fiery blaze</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span"><br />
</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span style="font-size: small;"><span class="Apple-style-span"><span class="Apple-style-span">Chorus</span></span></span></b><br />
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<div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">It’s funny how the real things are always about love</span></span></b></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">The answers are within ourselves, not in the stars above</span></span></b></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Just ask the boy with the blue guitar</span></span></b></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Just ask the boy with the blues guitar</span></span></b></div></div><b><span class="Apple-style-span" style="font-size: small;"><br />
</span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span style="font-size: small;"><span class="Apple-style-span"><span class="Apple-style-span">(Interlude)</span></span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">I can hear a thousand waves inside the smallest shell</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">When you’re mind is full of dreams there are only dreams to tell</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">I find myself at crossroads weary and dismayed</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">It is in my uncertainty that you make certainty the way</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span"><br />
</span></span></b></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; margin-bottom: 9pt;"><div style="font-family: Verdana,sans-serif;"><b><span style="font-size: small;"><span class="Apple-style-span">Chorus </span></span></b></div><br />
<div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">It’s funny how the real things are always about love</span></span></b></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">The answers are within ourselves, not in the stars above</span></span></b></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Just ask the boy with the blue guitar</span></span></b></div></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; font-weight: normal; margin: 0in 0in 9pt;"><div style="margin: 0px;"><b><span class="Apple-style-span" style="font-size: small;"><span class="Apple-style-span">Just ask the boy with the blues guitar</span></span></b></div></div><b><div class="MsoNormal" style="font-weight: normal; margin: 0in 0in 9pt;"></div></b><br />
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<tr><td class="tr-caption" style="text-align: center;"><b>November 2010</b></td></tr>
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</span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif; font-size: 12pt; margin: 0in 0in 9pt;"></div></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com1tag:blogger.com,1999:blog-1916147149704424709.post-11852986894026703182010-10-29T00:44:00.000-07:002010-10-29T00:45:33.687-07:00A Doctor's Visit<div style="font-family: Verdana,sans-serif;"><style>
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</style> </div><div class="MsoNormal"><span style="font-size: large;">Recently I was in my doctor’s office for my annual check up. I sat patiently in the waiting-room looking around at the pictures of his family positioned in large frames across the walls, and noticing how over the years his family of five children has grown to include husbands, wives and grandchildren. I was then called into another smaller room, where I waited for a few moments before the doctor knocked on the door and walked in. He greeted me warmly with a handshake and a smile, and touched my shoulder lightly as he sat down opposite me. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">Excitedly, I told the doctor that my first-born was going to be 18 in a few weeks. We reflected on how quickly the time had passed as we proceeded to compress the events of the past years into a matter of minutes.</span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">He was my doctor throughout my three pregnancies. He was a lucky find, a kind and softly spoken man with a calm and peaceful nature. I was just six weeks pregnant when I walked into his office those 18 years ago. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">Being pregnant and my journey into motherhood, was one of the most fulfilling and rewarding experiences of my life. I couldn’t wait for the routine doctor visits to hear how much my baby was growing, and as the visits became more frequent, the doctor became more of a mentor to me. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">I knew I was in good hands. He was able to ease all of my concerns and worries as the due date drew nearer. I was still completing my master’s degree at the time, and was actually preparing to go to an evening class the day the baby was born. It was 3:00 p.m. when labor began. We got to the hospital at about 5:00 p.m. The doctor showed up, and the team was complete. Just two hours later, at 6:51 p.m., my son was born. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">As we continued to talk about my health and life, the doctor asked how my son was doing. My eyes filled with tears as I spoke about the progression of his Duchenne muscular dystrophy since I last saw him a year ago. In his kind and soft way, he again eased my concerns and worries. He continued being present to what I was saying. </span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">The doctor really has been part of this Duchenne journey. Not only did he bring my son safely into this world, but he has looked after my health throughout all my pregnancies and follow up visits over the last 18 years. In this way he has been more than just my doctor but also a spiritual teacher and friend.</span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">Pregnancies and babies and motherhood are life-changing events, and to come back every year to the same doctor to discuss and ponder these events is rewarding. Life goes fast, and these doctor visits have allowed me to stop and reflect and share with someone who is genuinely interested. After all, I put all my trust and faith in him during that delivery.</span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">Most of all he understands. He understands the emotional investment we have in our children. As a doctor, he plays a major role in bringing babies into the world, present to the happiness and joy, and also to the sadness and devastation. The delivery experience can be as hectic and complicated as it is calm and peaceful.</span></div><div class="MsoNormal"><span style="font-size: large;"><br />
</span></div><div class="MsoNormal"><span style="font-size: large;">He gathered his papers as we neared the end of our appointment. I noticed he was much grayer than last year, and nearly bald, but still the kind and calm man he always was. As he stood up and shook my hand, he looked me knowingly in the eye and smiled just like he did the very moment he handed me my perfect son, seconds after he delivered him, 18 years ago. </span></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com2tag:blogger.com,1999:blog-1916147149704424709.post-85362616546682371012010-10-10T18:09:00.000-07:002010-10-10T18:12:02.809-07:00The Dark Cloud of Duchenne<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ-fyc2KDnaoWq5ncRRXXUvox8lB4QrjSCeDNkd9zf2PoBKh_MNt4O8ZYt_G-exyHcMh1P_F2U_3GqkX_AW6ZT5xEewwZGGboExhfG4dI1WtdjNTG7MQ1CDXAqnrYhDmng3gBv2Zoi8o8/s1600/DSC_0630.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJ-fyc2KDnaoWq5ncRRXXUvox8lB4QrjSCeDNkd9zf2PoBKh_MNt4O8ZYt_G-exyHcMh1P_F2U_3GqkX_AW6ZT5xEewwZGGboExhfG4dI1WtdjNTG7MQ1CDXAqnrYhDmng3gBv2Zoi8o8/s320/DSC_0630.JPG" width="213" /></a></div><br />
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<div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">I once read that life isn’t about waiting for the storm to pass but learning how to dance in the rain. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">The diagnosis of Duchenne muscular dystrophy felt like a sharp sword that stabbed and shattered my world. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">After that moment, a dark cloud hovered above my head, and would never leave. Every time I looked up, there it was, reminding me of the perils that lay before me. It was a frightening time, to think that my perfect, sweet child of six who I loved with all my heart, was going to progressively get weaker, until he could no longer walk or use his arms. He would lose his ability to eat or breathe on his own, and on top of all that, his life expectancy was put at age 20, if he was lucky to live that long. I felt an anguish that only a mother could understand, and my world stopped. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">How was I to navigate through this mess? There was no cure for my son, and no treatments. What was this disease? What did it all mean? What about my other children? The dark cloud was all around me. That was 11 years ago.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">To say there have been many challenges over the years is clearly an understatement. My earlier pursuits of undergraduate and graduate degrees were nothing compared to the task at hand. Not only did my husband and I have to learn about the complexities of Duchenne, but we also had to become experts in a short amount of time in order to fully understand and comprehend this disease if we were to save our son. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">As we embarked upon this endeavor we would learn the language of doctors and specialists, and enter a world of genetics: DNA, RNA, dystrophin, utrophin. We conversed with scientists and discussed with neurologists, orthopedists, cardiologists, and pulmonologists, and even pharmaceutical companies. The list went on and on. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">We had to educate family, friends, teachers, schools, physical therapists, and attend conferences. We became lobbyists, organized fundraisers, and served on charities. Eventually we would have to research wheelchairs and adaptive technologies, and later assistive devices such as coughing and breathing machines. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">Over the years difficult decisions were made regarding drug treatments. The side effects of some of the drugs, such as cortico-steroids, were dramatic. Another, gentamycin, also generated toxic side effects. But there was little else. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">Further along we learnt about a small molecule drug, and participated in a very promising drug trial. My son was poked and biopsied, and became a guinea pig for the generations to come after him. It turned out that for 18 months he was on a dose that was actually ineffective. The trial stopped temporarily.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">Throughout, the dark cloud remained. My son was getting weaker, and despite all we were doing we had little choice but slowly to surrender to the relentless nature of Duchenne, which was steadily stealing his life away.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">Although there have been huge advances with the unveiling of new drug trials, and many scientists coming forward with renewed optimism and hope, today there is still no cure for my son, and no treatments. Despite this new tide of optimism, the obscured reality is that our older boys are loosing their lives to Duchenne.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">The dark cloud became darkest about a year ago, when my son, then 17, had a routine visit to his orthopedist. After an examination of his back and an x-ray, the doctor informed us that his scoliosis had suddenly worsened compared to a few months ago. Because of the curve in his spine, his chest was being rotated and as a result was compressing the space available for the lungs and heart. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">The doctor told us matter-of-factly that my son would need to have two rods inserted along his spine, routinely called spinal-rod surgery.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal" style="line-height: 18pt; margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><span style="color: #262626; font-family: Symbol;"><span class="Apple-style-span" style="font-size: medium;">·</span><span style="font-family: 'Times New Roman'; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span class="Apple-style-span" style="font-size: medium;"> </span></span></span><span style="color: #262626; font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">After making the incision, the muscles are then stripped up off the spine to allow the surgeon access to the bony elements in the spine.</span></span></div><div class="MsoNormal" style="line-height: 18pt; margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><span style="font-family: Symbol;"><span class="Apple-style-span" style="font-size: medium;">·</span><span style="font-family: 'Times New Roman'; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal;"><span class="Apple-style-span" style="font-size: medium;"> </span></span></span><span style="color: #262626; font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">The spine is then instrumented (screws are inserted) and the rods are used to reduce the amount of the curvature.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">He said that during the six hour-long surgery he would require a blood transfusion, since there would be much blood loss due to the incision along the back as well as in the bones. But he reminded us that surgery would give him a chance of living longer. He said we needed to act quickly due to my son’s decreasing lung function, which is detrimental during surgery and recovery. I could swear the blood left my veins. I felt so desolate.</span><span style="color: #262626;"><span class="Apple-style-span" style="font-size: medium;"> </span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">After a visit to the pulmonologist, the go ahead was given. My son’s lung capacity was at 40 percent. Although it is preferable to do this type of surgery when they are younger and stronger, the doctor said if we act swiftly the surgery is still safe. He lectured not to wait too long, as lung capacity will get too low, and then the surgery will be more risky. He added that he couldn’t guarantee anything. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">The doctor’s words echoed loudly through my mind, my thoughts in a spiral. The idea of spinal-rod surgery induced a feeling of desperation and fear, the fear of my son possibly dying through this ordeal, and possibly dying if we didn’t go through with it. And the recovery process, what about that? I didn’t want to lose him. There was no guarantee he would make it. We were at a crossroad, an impossible predicament.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">The bottom line was the horrific realization that we may lose our son sooner than we thought. We were damned if we did and damned if we didn’t. How could I make such a decision?</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">For three months, my mind and thoughts were in turmoil and the dark cloud followed me into my dreams. I was supposed to make a decision. How? I had so much advice designed to help me through my dilemma: “Pray”, they said, “Through God you will know”, “It is God’s will”, “I will support you”, “It will be fine”, “The right answer will come to you”, “Reflect”, “I know a good priest”, “A swami”, “A monk”, “You must do it”, “You must not do it”. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">I searched through the chambers of my mind for answers and solutions. It was the most difficult time for me, the most difficult so far on this Duchenne journey. I was now facing head on the ugly reality of this cruel disease. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">The only answer that came was nothing. Did this mean no? Had the universe responded with a no? </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">After those months of what felt like an eclipse, I woke up one morning, and drew open the curtains and looked outside. I noticed the colors of nature, the sunshine. I looked up at the blue sky. I felt free. The dark cloud had gone. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">I felt as if a weight had been lifted off me. I felt liberated although nothing had really changed. I realized that the burden of the decision had deeply affected my happiness, my very nature. I acknowledged my internal conflict and let it go. I let all my thoughts go. I decided that I didn’t want to fight and resist anymore with this disease. These were precious days and I still had my son. My perfect, sweet child of 17 was here with me, to touch, to hug, to love. Nothing was going to get in the way. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">We never did have the spinal-rod surgery. My son is 18 in a few months. We are in the so-called “late stages” of Duchenne.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">I was recently at a back to school night for my younger son, where parents and teachers get to meet and connect. I noticed during the five minute interval between classrooms, how the crowd of parents rushed along, headstrong, serious and focused and impersonal, not even stopping to say “hello”. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">And then I wondered about the world of students, how in contrast they would amble along, chatting and laughing, carefree, drifting from classroom to classroom. </span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">I thought about my son with Duchenne, how he has missed much of this experience since he is home schooled, and how he may appear as an outsider. I reflected on his positive outlook, his radiance, and his mind so full of ideas and dreams. As I continue to navigate through this sea of uncertainty, I realize that I need to steer a less rigid course and to adopt a less serious way of thinking, and to enjoy the journey rather than worry about what comes next. After all, the future is something I have little control over.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-size: medium;"><br />
</span> </div><div class="MsoNormal"><span style="font-family: Verdana;"><span class="Apple-style-span" style="font-size: medium;">I stood somewhere in between the two worlds that evening of focused parents and carefree students. I stopped amidst the flow of the parents hurrying past me. I opened my arms wide, as if feeling for raindrops. Even though the dark cloud had gone, there were still going to be rainy days, there were still tough days ahead. But I had a renewed lightness of being. At that moment, I realized that through my journey with Duchenne, I really had learned to dance in the rain.</span></span></div><style>
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</div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com16tag:blogger.com,1999:blog-1916147149704424709.post-28119688522890485712010-10-08T21:18:00.000-07:002010-10-09T16:08:56.988-07:00It's Your Turn<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTL-K8bjF4mcX3Y7_UgWa4zqK6fgv2cxtVOE7Sbn3VI-VYKO8-R02AG5JYpbDwGt8uJrnTO4iznLdupIVG3QouSHEDzSiObVfHAxT1CgnzMoIR6FwSWqob_GJQB5oPApZk6GnWfc-Ct1I/s1600/Sunday+mornng+chess.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjTL-K8bjF4mcX3Y7_UgWa4zqK6fgv2cxtVOE7Sbn3VI-VYKO8-R02AG5JYpbDwGt8uJrnTO4iznLdupIVG3QouSHEDzSiObVfHAxT1CgnzMoIR6FwSWqob_GJQB5oPApZk6GnWfc-Ct1I/s320/Sunday+mornng+chess.jpg" width="320" /></a></div><style>
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</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">It was my son’s first driving lesson. I stood and watched from the driveway as he carefully pulled away from the curb, his instructor next to him equipped with an emergency brake pedal. I was excited for him and as they disappeared around the corner, I couldn’t help but reflect upon my first driving lesson, and how I remembered it like yesterday. </span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">As a teenager, learning to drive was one of the most exciting things I experienced. Once I got my license I used to enjoy the freedom of exploring, and would happily zoom along the narrow, winding country roads of Kent, and also through the tropical rain showers along the unpaved, potholed roads of Sabah. It was thrilling. It was an adventure.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">I used to enjoy conversations that revolved around cars, V6 engines, torque, pistons, spark plugs and so on. Not that I understood the intricacies of car mechanics, but I knew about the best performing cars of the day. I drove my fair share of cars that were exciting to me.</span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">The most exciting car I drove was when I purchased my 1966 Ford Mustang, 20 years ago. The car’s freshly waxed, Cherry Red paint glistened in the Californian sunshine, and its emblem,</span></span><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"> a shiny chrome galloping pony across the grill, leaped out at me, as if beckoning me to buy it. I knew that car was meant for me. Its engine roared and sounded powerful and rugged.</span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">Every time I drove that car, I thought about the galloping mustang, with its mane and tail flying in the wind. The Mustang accompanied me on many an adventurous road trip north, south and from coast to coast across the United States. </span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">I thought about the adventures in store for my son, as he embarked on his series of driving lessons.</span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">A few days later, my son shared with me some difficulties he was having staying focused during his driving lessons. He asked me if I had any tips. That evening, I challenged him to a game of chess.</span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">As we sat down across from each other, we set up the chess pieces on the board. I referred to my knight as a galloping pony. My son played white. As he moved his pawn forward I said to him that in many ways chess was a lot like driving. Chess has rules just like driving. In chess, you need to be focused, aware, accurate and decisive, just like driving. The pieces on the board, I continued, were like the cars on the road, unpredictable. One needs to be razor sharp at all times. One small error can be fatal. </span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">I observed my son throughout the game and saw him think, analyze and forward plan his strategy, in a measured, calm and objective way. I suddenly realized he was gaining an upper hand in the game. After the constant cross checking of pieces and problem solving, an intricate game emerged where the pieces on the board appeared locked in. The game became intense but exciting, just like driving. </span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">My queen swept across the board and took his bishop. Intentionally, he put my king in check. I maneuvered my king to the corner square. With precision, he took my galloping pony. He won the game that evening.</span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">After my son’s next driving lesson, he said with confidence how he felt more comfortable, aware and focused on the road this time. He added that he has started to really enjoy driving.</span></span></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;"><br />
</span></span><span class="Apple-style-span" style="font-size: medium;"> </span></div><div class="MsoNormal"><span style="color: #262626;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-size: medium;">Under a large light green, faded cover, in a garage, sits that old Mustang raring to go. It is still as shiny and sparkling as it was that first day I set my eyes on it. The galloping chrome emblem still leaps out at me. I have kept it as a gift for my son to drive. Now, it is his turn. It is his adventure to have.</span></span></span></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com0tag:blogger.com,1999:blog-1916147149704424709.post-81734292177026926472010-09-28T19:29:00.000-07:002010-09-29T22:21:15.996-07:00A Tale of Two Clock Towers<div class="separator" style="clear: both; text-align: center;"></div><div class="separator" style="clear: both; text-align: left;"></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_1rPsNCUBRPJ4-E-G3EeuV5iv7HTZwWznsuoRUmnPAQTNE2ifmoZB46iS609nRvRr52yPDXC8ySaMA59tp4D_WBWzvnjUThHM3J0yDlzMrojiBunh0WcQz-JKrLXB2ySnd0HqWV-h7EM/s1600/IMG_1064.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><b><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi_1rPsNCUBRPJ4-E-G3EeuV5iv7HTZwWznsuoRUmnPAQTNE2ifmoZB46iS609nRvRr52yPDXC8ySaMA59tp4D_WBWzvnjUThHM3J0yDlzMrojiBunh0WcQz-JKrLXB2ySnd0HqWV-h7EM/s320/IMG_1064.jpg" width="240" /></b></a></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><b><br />
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<div class="MsoNormal"><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;">My neck ached as I stood gazing up at the Clock Tower, mesmerized by all the thoughts that were going through my mind. In 1859, during the heyday of the British Empire, this now famous icon was completed.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;">My thoughts were interrupted by its loud, forceful, grand chime. Its sound vibrated through my body, from the top of my head to my toes. The noise from the nearby buses, motorbikes and cars distracted me for a moment as I noticed people pushing and bumping into me as they frantically looked up, not wanting to miss a single chime. <o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;">Again I drifted off to a historical time when Britain expanded and colonized much of the world. To imagine, during the Second World War, that despite the heavy bombing during the Blitz, when London was bombed for 76 consecutive days, the Clock Tower survived with little damage, and Big Ben’s bell rang accurately throughout. <o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;">Big Ben’s chimes would be heard in living rooms around the world during that time, through the BBC World Service, sounding loud and clear that Britain had not been defeated. <o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;">My mother was 11-years-old during the Blitz, and she recalls how every evening, her family would assemble around the radio, awaiting the six o’clock news. She reflects on how inspired and patriotic she felt upon hearing Big Ben’s comforting, booming chimes coming through the radio before the news report.<o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><br />
</span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;">My father reflects upon that time too, and on another clock tower, a clock tower literally on the other side of the world.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><o:p></o:p></span></div><div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0bGWcdf3WT5CaRkXilbWXdk8yaLaA9dX9Z8o3EQyqfPVh49zjQsKfScU8tGioQXHgfbrUW3KyyFrdburZQ0haJXmXKc00TB3c6FmajISVuaWuSz1tDFe-_W814DrP13JWvvY7fMjNf3g/s1600/Atkinson+clock+tower.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0bGWcdf3WT5CaRkXilbWXdk8yaLaA9dX9Z8o3EQyqfPVh49zjQsKfScU8tGioQXHgfbrUW3KyyFrdburZQ0haJXmXKc00TB3c6FmajISVuaWuSz1tDFe-_W814DrP13JWvvY7fMjNf3g/s320/Atkinson+clock+tower.jpg" width="240" /></a></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><br />
</span></div><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;">In the late 1800’s, the British North Borneo Company began to establish colonies throughout North Borneo. They created Jesselton, a main harbor and port.<o:p></o:p> In 1904, the Atkinson Clock Tower was built in memory of North Borneo’s first district officer, George Atkinson. It sat up on a hill, close to the shoreline, and served as a beacon for ships. <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"> <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;">My father was born and raised in North Borneo. He was one of 14 children. During the Second World War,</span><span class="Apple-style-span" style="font-style: normal;"> Borneo was engulfed in conflict for three years, marked by destruction, pain, humiliation and suffering. As a result, </span><span class="Apple-style-span" style="font-style: normal;">Jesselton was destroyed, almost flattened, except for three structures, the Atkinson Clock Tower being one of them. <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"> </span><o:p></o:p></span></address><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;">The Japanese occupation was a harsh time for my father. Both his father and brother were falsely accused as spies, and imprisoned. It was to be the last time my father would see either of them again. He was only 15. <o:p></o:p></span></div><div class="MsoNormal"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><br />
</span></div><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;">My father recalls the comings and goings of Japanese aircraft overhead, and the distant sounds of bombs dropped. A few times, as the bombers got closer, he remembers how he had to run and hide inside the narrow ditches on both sides of a nearby field, close to the Atkinson Clock Tower. It wasn’t just the bombs he had to dodge but also the bullets from the machine guns that fired out relentlessly from these low flying planes. There have been stories of many who actually hid inside the Clock Tower itself.<o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"> <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;">After the war, The British Crown rebuilt Jesselton as the capital city of North Borneo. (After independence in 1963, the name changed to Kota Kinabalu). <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"> <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;">The town grew into a modernized city. One does not always notice the Clock Tower these days. It sits nestled amongst trees, and has been made into a heritage site. It is quite a distance from the shoreline now, as a result of extensive land reclamation and considerable development. <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"> <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;">But nevertheless, there it stands, as a legacy, as a reminder of all that has happened. Like Big Ben, the Atkinson Clock Tower, although not as famous or as glamorous, has stood the test of time. It has witnessed the rise and the fall of the British Empire, the Second World War, and most importantly, the memories that are forever cherished throughout the generations. <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"> <o:p></o:p></span></span></address><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;">These are the stories that are passed down from our grandparents and parents, of a time past, but which deserve respect and acknowledgement and preservation.<o:p></o:p></span></span></address></div><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"></span></div><div class="" style="clear: both; text-align: left;"><b><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"></span></b><br />
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<div class="separator" style="clear: both; text-align: center;"><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0bGWcdf3WT5CaRkXilbWXdk8yaLaA9dX9Z8o3EQyqfPVh49zjQsKfScU8tGioQXHgfbrUW3KyyFrdburZQ0haJXmXKc00TB3c6FmajISVuaWuSz1tDFe-_W814DrP13JWvvY7fMjNf3g/s1600/Atkinson+clock+tower.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><b></b></a></span></div><address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"><b> </b> </span></span></address><span class="Apple-style-span" style="font-family: Verdana,sans-serif;"><span class="Apple-style-span" style="font-style: normal;"></span></span><br />
<span class="Apple-style-span" style="font-family: Verdana,sans-serif;"></span></div>Cath Jayasuriyahttp://www.blogger.com/profile/04852813925843432521noreply@blogger.com4