Clouds, May 2010

Clouds, May 2010

Thursday, May 19, 2011

Chart This.

I started more than one journal at different times in Hayden's life...never kept up with any of them. The first one was when he was a baby, and I realized after x amount of months (no pun intended) that I had little to report on. Only because every day was so unbelievably similar to the one before. 

When his teeth started coming in and his smile became even more attention-grabbing, I wrote about that. I kept counting the teeth and repeated how much we loved him and how proud we were of him. I would also go back and forth to that book about what to expect during the first year, but I got bored with it. Not annoyed that my kid wasn't doing those things, and surprisingly not afraid either, but just bored. Because I could not relate so I didn't feel like reading about whatever most kids do, by whatever age. 

Gradually the journal writing stopped. I remember when my husband and I were at a friend's wedding a number of years ago, and Hayden was approximately 9 months old at the time. It was around then that our confusion over Hayden's slow development began. The doctors kept telling us he was only developmentally delayed due to his large size-- because his height was off-the-charts (he has evened-out now). 

By the way, at the time, I SO LOVE that my grandma told me the doctor should get a new chart. 

Anyway, I remember one of our friends whispering to me during the reception, when the groom was dancing with his mom... the groom being significantly taller than his mom...and she smiled and said something along the lines of, "that's you and Hayden one day." I couldn't envision it. I was not upset, but I couldn't envision it for some reason. So, nine months was the age our suspicions began, but they were ultimately not confirmed until Hayden was 17 months old, in November of 2006. 

We're almost 5 years into the diagnosis now (4 1/2 to be exact). H will be 6 next month, and transitioning into Kindergarten next year. That is one reason why I am getting back into writing about him, to track his developments and progress, and personal growth.

Also because September will likely mark another milestone... the beginning of medication. Our decision of which regimen, is pending whether or not H will be part of a clinical trial. Last month we traveled out to California to the M.I.N.D. Institute (something I had anxiety about for more than a year). The miracle-working specialists we met with, got the ball rolling for us. 

There was nothing "easy" about that trip, but that being said...there are still no words for how much H impressed us. Airport...airplane...long ass flight...another airport...strange place...time difference...long ass car ride...hotel...appointments...another strange place...unfamiliar people...another hotel...airport...etc...

As out-of-sorts as he was, he was unbelievable. He just gets through something when he needs to...he just does. (Frankly, I wish some of that would rub off on me.) I remember when he was 2, and one day the physical therapist commented that even though he could see just how exhausted Hayden was, clearly Hayden's motivation was taking over. He was 'wowed' over Hayden's determination to make it the entire length of the kitchen, on a scooter board, using only his arms to navigate.  

I guess his height doesn't have to be the only thing off the chart.

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