Two weeks ago we celebrated Teddy's 12th birthday. While 12 may not seem like a milestone, every birthday for Teddy feels like a milestone because of the medical literature that existed when we got his diagnosis when he was 2.5 years old.
At that time, there was so little known about his disorder (at the time called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1, now known as PIGN-CDG) that Google returned less than 10 results. And tucked into those results was the life expectancy of 3 years.
Imagine reading that when your child is only 6 months away from turning 3, wondering why he has this invisible expiration date that you didn't know existed, contemplating how your relatively healthy child could be dead in months.
Needless to say, the medical literature was wrong. While his disorder does unfortunately take away far too many of our children far too early from complications from seizures, respiratory illnesses and a world that is too hard for those sweet ones with medically fragile bodies, others are surviving and thriving well into their 30s and likely beyond. Given that this disorder was only discovered in 2011 and that there's so few known cases, that's why we aren't aware of older individuals, not because they don't exist.
So that's why birthdays feel monumental. At times they feel challenging because it's hard to know what to get Teddy some years. Other years it's a reminder of another year of age, yet developmentally not being where his peers are. We never know quite what emotions will arise with birthdays.
But this was a sweet year, a day filled with a bunch of family and friends. A day spent playing with all his people, loving that more than any of his gifts, though he did great opening his gifts. A year with lots of ice cream gift cards, so he and his best friend can keep visiting Baskin Robbins like it's going out of style.
Oh, and there was dancing and a giant dinosaur balloon to ride ... until it died. But it's probably an OK thing that it died because Teddy was about to make all the adults ride it.
