Wednesday, May 12, 2010

The New Normal

A month after Sebastian's first birthday, our pediatrician dropped a bomb on us: Sebastian has "a severe, global, developmental delay and will probably need special assistance all of his life."

Um, WHAT?  

I glibly asked, "How do you know? What are we talking about: remedial reading or he's going to live with us for the rest of his life?" She didn't directly respond, but it was clear she was suggesting the latter. That was the first and last time I asked this sort of question.  General speculation is, frankly, useless.

Steven and I had asked for this special appointment to see the pediatrician because he wasn't very mobile yet; suddenly she's sending us for genetic testing and talking about the likelihood of mental retardation.  [A brief note here: Sebastian was a healthy kid who had only needed to see his pediatrician for well-baby check-ups.  I'll reserve the outrage about the doctor completely missing his delays and seizures for a separate post.] Pardon my language, but it was like a fucking mental earthquake.  My mind was breaking into pieces with the shock of the news.

Standing in the parking lot of the pediatrician's office, reeling from her prognosis, I had a thought: you don't wish for your child to have a (merely) normal life until that isn't an option.  Everything we had ever planned or dreamed about our life, from the day we found out I was pregnant to that moment, seemed no longer possible.  The future seemed so unclear I couldn't envision anything beyond driving home.

That was September 7, 2007.  Since that day, we have done many, many tests, tried loads of medications in various combinations, and done countless therapies.  Sebastian has a vast array of challenges.  If you're still with me and you have the time, click the link for a summary of what he's currently dealing with.  Sebastian's brain remains a mystery; we have no idea why it functions as it does.  But, it quickly became apparent that, though Sebastian's development may not progress organically like a typical child, he has a huge capacity to learn with the right instruction.  The end of the world was no longer near.

People frequently ask us two questions when they initially hear about Sebastian.  The first is always: Do we know why this happened?  No, we don't, but it's not for lack of trying.  I certainly burned up the internet, bought books and did my best House differential to figure out the cause.  Like so many kids, Sebastian's challenges are idiopathic.  After his genetic and metabolic tests came back negative and normal, and his MRI and PET scans were normal, we simply had to focus on What To Do Now.

The second question is often:  What do "they" say will happen?  They--the doctors and experts--don't know.  How could they?  How does anyone know what will happen with his kid?  I feel pretty confident that, at 16, Sebastian won't be getting high and stealing cars.  But if he is, I think we can all agree, his therapies will have been pretty damn effective.  Instead of abstract worrying about Sebastian's future potential, we're focused on tangible ways to improve Sebastian's participation in his world now.

Occasionally, we still do tests when it might inform the utility of a potential treatment.  We constantly look for new types of therapies to approach Sebastian's development.  There have been plenty of setbacks, failed medications, ineffective therapies, new challenges uncovered.  When a treatment doesn't work, we cross it off the list and move on to the next.  It's how we got to a lot of his current therapies and on the ketogenic diet.  As long as there is a list, there is opportunity.

With two small kids, we do the usual stuff: go to pools and parks and out to restaurants.  We travel with the kids on road trips and long flights.  Like all parents, we continue to figure it out as we go along.  Because of Sebastian, Steven and I are more more resourceful and creative parents; we are more generous and grateful human beings.  Our life is complicated, but far from tragic.

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