Today Tristan had a huge victory that no one really saw. Everyday he has this battle when I leave him at school. In the past it can take a team of staff holding him back screaming while I walk away as fast as possible. Which usually gives me a panic attack on the way to work. Weve been doing this since August, and it often leaves me on the verge of tears every morning. But the last few weeks hes gotten out of the car, ran to the door, and giggled when I hugged him goodbye. I wanted to high five someone but no one really saw this big milestone, so Im telling you instead :) I also have to confess that Tristan has slowly declined over the last few weeks. Stress and sickness can cause his symptoms to flare and set back his progress from weeks to months. Between our trip, starting kindergarten, and moving that its taken a toll and is reminding us that JDM is still apart of him. Lately Ive noticed him struggling to do small physical activities like buckling his seat belt or putting on his shoes. Hes been so tired, warm to the touch, and crabby. In my mind I know this is JDM is rearing its ugly head. After watching him struggle yesterday I decided that it was time to call MDA and borrow a wheel chair for him to use at school. Its a step Ive really tried not to take but I know that it will help preserve his muscles and energy, but with that will come a new set of challenges for him at school with his friends. But Tristan is the toughest and most charismatic kid I know and he will conquer this battle like all the others. He amazes me everyday in all that life throws at him. So lucky to call him mine. Please keep Tristan in your prayers. Love to you all. #teamtristan Steven Coffey
Posted on: Tue, 09 Dec 2014 14:31:16 +0000
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