The evening of a new school year and  what I feel is a new bigger school for Jahan. Tonight as he sleeps he hugs his “turtley” and superhero blanket that gives him strength apparently. I wish these super hero blankets did really work with the powers he describes for it. Most parents feel concerned about their child starting new school years and new schools, but for some reason tonight I am filled so much with dread and worry. I can’t help but think with the progression of Duchenne this will be the school he will decline, losing lots of his abilities including to keep up and possibly being told by other children about his condition and life expectancy. He still only knows he has muscles that get tired. He will be possibly the youngest in the whole school and the one that is extremely less mobile and fragile than the others. He will join a playground of so many children, the whole thing totally scares me as a simple fall for him has big potential to be life changing in a bad way. He knows his limitations, he probably won’t even enter the playground and will stand to the edge as he’ll feel very vulnerable. I hope many of his friends will stay by his side or keep a look out for him so he will never feel alone and Mount Royal PS will do their very best to protect my precious little boy. 

Today being World Duchenne Awareness Day has got me a little emotional…September 7…gawd this day…

Jahan, be strong, helpful, sweet and sensitive…… and to all my friends …Good luck to all your kiddies too….

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