As we put away another batch of outgrown clothes and overused toys we're reminded what a long year we've experienced since Silas had his third brain surgery and his trach placed. Last March we had just begun to think we had gotten used to taking care of our little guy, but by early April our journey became a lot harder. After the tracheostomy, he needed constant care and attention. He had machines and tanks and tubes and all kinds of things we knew nothing about. Even though we (mostly Matt) had read countless medical studies, texts, blogs, and discussion threads from doctors and parents of children with spina bifida, we had skipped over the trach sections. Suddenly all those words and procedures meant everything to us.
We're not going to lie. It's been really, really hard. Having a kid who needs extra attention (for any number of reasons) makes everything a bit harder. Putting the effort you'd like into your career, staying healthy, and keeping up relationships (including being kind to one's spouse) can sometimes seem like luxuries. It can be discouraging when kids his age can "do" more and don't need 40-item checklists just to leave the house for a few hours.
But... of course there's a "but"... we're grateful. We're grateful that Silas seems to have been given gifts even rarer than his birth defect. We beam each time a therapist offers an evaluation that includes the words "amazing progress," and when nurses and doctors who don't even have appointments to see Silas stop by the waiting room just to say "hi" and accept the smile and clapping that Silas inevitably offers. People who spend time with him leave encouraged and often tell us that Silas's eyes reveal that he has some important things to say. We are grateful that he continues to grow in every way. He learns quickly, listens patiently, laughs deeply, and loves easily.
This past week we visited Grams and Grandpa in San Diego. Highlights: first haircut, swimming, sushi, and naps (the latter being enjoyed most by mama).
We loved looking at the boats, airplanes, buses, trains, and motorcycles we could see from Grams and Grandpa's house.
Airplanes! We brought the Kidwalk so Silas could get right up to the edge of the balcony and see the airplanes taking off. He had to stand up to see it.
Eating seafood on the dock and looking at boats (and birds). Silas might go from eating pureed turkey and rice straight to fish tacos.
Aunt Mindi helping us wind down after a long day. Silas looks like a big boy, although the horizontal stripes help.Someone mentioned that his long, red, stick-out-straight hair bore some resemblance to a baby orangutan, and we couldn't help but agree. It was time for his first haircut. Technically, this wasn't his first, as the doctors shaved a small patch for his first brain surgery when he was just days old. That patch grew out slightly longer than the rest and mama had a hard time saying goodbye to the little reminder of Silas's bravery.
You just can't argue with sitting in a firetruck for a haircut.
And finally, our biggest joy: swimming. Silas loves the water. He splashes, kicks, squeals, and displays a smile you'll never see when he's doing anything else.
Warming up with Grams.
Happy Spring everyone. Enjoy the signs of new life all around.
