17 years.
You have no idea how hard that is to truly believe.
In spite of all of the medical adventures starting on the first night you were with us that would lead us through two brain surgeries and many hospitals and appointments, it is staggering thinking it’s been 17 years.
It literally feels like it was just yesterday when your mother saw you have your first seizure.
We had thought that Nicholas’ stay in the neonatal intensive care unit (NICU) at WakeMed was exciting. It certainly was for those nurses who were shocked at having such a large baby to play with. They normally don’t see 35-week premies there…their usual patients are much smaller and generally have more difficulties than the eight days your older brother learnt how to eat and be, well not so yellow. And we truly thought he was a decent size until it was time to put him in his car seat for the first time and it practically swallowed him whole! 🙂
We had no idea.
You actually came home for the first time faster than Nicholas did…you were out the door in five days compared to the eight days he spent in hospital. Mind you, it did take a bit of doing to get out there but you did the trick when you decided to have a bit of a wee in my general direction and the nurses were satisfied that particular bit was in proper working order.
It didn’t take long for you to go back into hospital and for us to find out that you had some exceptional challenges you’d have to deal with. In fact, you’d end up going through three different hospitals by the time you were ready to recover from your first brain surgery at seven weeks of age which is a record that probably *STILL* stands 17 years later. You’d start out at WakeMed, then head to Duke where they actually had a pediatric neurosurgeon and finally after two weeks of dealing with that place, you’d find your way a bit north of here to Washington DC and Children’s National Medical Centre just north of the Capitol building.
It was a bit of a trick getting you there…your mother had some friends suggest some surgeons and we did a little checking to find Dr Derek Bruce who you would charm the socks off when you finally met him. When we discovered that he’d practically invented the field of pediatric neurosurgery and was arguably the world’s expert on your cortical dysplasia, it wasn’t a hard decision to get you north to Washington DC.
You actually got to ride in a Super King Air specially kitted out as a flying ambulance with your mother sitting next to your bed in the plane. What you wouldn’t have known was when your plane showed up at the outer markers on the approach to Dulles International, you’d effectively halt air traffic in the entire national capital region.
Everyone that was at the gate was kept parked, everyone flying south and east was spun over the Chesapeake and everyone north and west got to see much more of the beautiful Appalachian Mountains and Shenandoah Valley than they likely wished to.
That is until you landed and rolled out to the ambulance waiting to take you from the airport well west of DC to the hospital just north of the famous bits of that city.
The rest of us had to drive 4-5 hours and get to thoroughly enjoy the nastiness that is the Beltway at rush hour.
Three weeks later, we’d finally be on the road back home after your surgery and a recovery that was a bit more complicated than we had hoped it’d be and for a while it appeared that your seizures were gone.
We had no idea that they would eventually come back and that you’d get a second surgery in Washington DC. And then the seizures would go away again and then them come back in kind of a weird form that the neurologist would end up using one of the oldest drugs to treat. And they’d kinda sort of go away just to come back in a weirder form.
We’d see you go through many hours and hours of therapy and go to school with a smile even with the difficulties. We would watch you become the “Mayor of Washington” and then rule your middle school with a smile and now here you are at Enloe High School and taking everything in stride.
And it was truly worth it because I would crawl over several kilometres of broken glass to see your smile and hear your laugh!
There’s no getting around this very simple truth…you truly love people. Every last one of them, even the ones who have occasionally been mean to you…you’ve returned what they’ve given you with a smile and love.
Mahatma Gandhi would be so proud…you embody satyagraha (“seeking truth”) and ahimsa (“non-violence”) in ways he’d likely find remarkable in one so young.
But it’s not really surprising when you think about it. You’ve overcome so much and grown in ways we never would have imagined 17 years ago with the various diagnoses and predictions we were given. You’ve managed to exceed all their expectations and completely rewrite the books on your conditions.
And you’ve done it with such grace and love that is truly amazing.
So even though you might well drive us all to distraction from time to time with your encyclopaedic knowledge of TV and movies, never forget that you are beloved far more than you might ever appreciate for you have shown us how to live a life of grace and love that is so rarely seen in this day and age.
And you’ve overcome many obstacles and what ones remain you accept and deal with such equanimity and peace that reaffirms what I’ve said all along: “you’ve forgotten more about courage than I can ever hope to know”.
And I’ve meant every last word of that statement.
Happy birthday and here’s to many more happy returns of your day! 🙂
