It seems mind-boggling that sixteen years ago today, we were welcoming a new boy into our family.
We didn’t have the faintest clue what kind of roller-coaster ride we were boarding that day and the many years of medical frequent flying and excitement to come. At the time, we were more astounded at being able to do the normal “we’ve just had a baby” stuff right after you were born…like actually get to hold you for a bit before you were whisked away to the nursery. And then you’d come back to visit for a while after the nurses over there did their thing. We actually could contemplate being discharged in the usual 48 hours after your birth.
We never had that with Nicholas. He was born a bit prematurely and before we knew it, he was off to intensive care where he got to be more their baby than ours for several days.
So imagine our surprise when we started seeing your first seizures after what was by all accounts a normal birth. Surprise that would turn into many other feelings over the next seven weeks of mostly days in hospital leading to your first brain surgery at seven weeks of age (which as far as I know is a record that still stands and may well never be beaten).
In the years to follow, there would be another brain surgery and some years free of seizures before another variation on them would rear their ugly head. And more years of trying to figure out what was going on and having bits of hope dashed on the rocks of reality when it was discovered you were dealing with multiple types of seizures and it seemed that no matter what we tried, it didn’t seem to be getting better for you.
But here’s the funny thing about the whole situation…throughout the whole darned thing, you’ve managed to deal with challenges that most of us would consider completely intolerable. Simple things like trying to use a left arm and hand that stubbornly refuses to do what you’re trying to have your brain tell it to do. Difficulties trying to get your point across in spite of speech not really being helpful to you. And most importantly, you’ve shown an amount of grace that is beyond human in spite of the occasional people who don’t get you, don’t understand what you’re having to overcome that they would take for granted, and even were breathtakingly mean to you.
At your core, you truly love and care for other people to such a degree that you remind me quite a bit of the two people I love very dearly and cherish beyond words and who embody that spirit of near endless empathy and compassion rarely seen in this world today…my Grandpa Williams and my cousin Hannah.
And people love you more than you’ll know. For goodness sake, you were the reigning “Mayor of Washington Elementary” for so long that by the time you left for middle school, they had a heck of a time trying to find someone to step into your shoes and do the job half as well.
That is the memory I will take with me of the drive-by birthday parade today…so many people from many facets of your life (school, dance, and even therapy!) made the trip to show you that you mean quite a bit to them. And in so doing, they have made an indelible impression upon our hearts…for all who came to celebrate your birthday and wish you good thoughts if distance or schedule didn’t permit…you’re definitely family to us even if you weren’t born to it.
Who knows what madness the next sixteen years will bring?
What I do know is that you’ve forgotten more about the concept of courage than I could ever hope to know. I’ve said that consistently your entire sixteen years and I mean it sincerely. The grace by which you have walked through dark places which none of us could truly imagine is a welcome light in the darkness of this world.
We found out recently that for the first time in ten years, Alex’s EEG has actually shown improvement and his achievements at school in all of his subjects as well as his ability to express himself are a gift we’d truly wondered if we’d ever see. We’re cautiously optimistic about what that EEG can portend but for now, it’s one foot in front of the other and taking the day as it comes.
Happy 16th birthday, Alex! And may you have many happy returns of the day! 🙂