I’m in the midst of spending my first summer at home with the boys. Last summer, Marshall was still going in and out of the hospital with every cold he caught, so we didn’t end up spending a lot of time together at home. This summer has been one of fairly good health, so other than scheduled appointments and an MRI last week, we’ve lounged around the house a lot, gone to parks, and run down just about every Pokemon we could get our mobile phone hands on (that sentence is going to sound really dated in a few years).
You’d think with the good health, things would be great, and in many ways, it has, but the calm before the approaching storm (more on that later) has given me the time and space to digest what’s been going on, and frankly, I’m angry. I’m resentful, and I shouldn’t be by now. I just can’t let it go.
Now that he has been out of the hospital for his longest stretch yet, Marshall appears to be making up for lost time developmentally. He’s playful and he’s learning to communicate. He’s on the verge of walking without holding on to anything. Watching him interact with Quinn is a joy to behold. Sometimes, I’ll ask him to touch Daddy’s face, and he’ll reach his little hand out as far as his stiff shoulders will allow, and he’ll gently touch my cheek.
His hands were the first indication the instant he was born that something unusual was going on. I remember seeing his fused fingers, and thinking maybe he had some sort of sac covering his hand, but in my mind, I knew something was up. I’m not the only one who had a hard time holding his hand at first. It was difficult to feel the lack of a space between his digits for a long time.
I love his little hands now. The feeling of a hand that smooth and unbroken on my face is still shocking, but there is nothing softer than the palm of his little curved hand. He has adapted incredibly well to the limited mobility in his fused fingers and his small bent thumb. He picks up food and toys with ease, and delightfully bangs away on the piano day after day. It’s also the hands of other children his age, though, that bring up the anger in me the most.
It’s ridiculous that I can’t get past this. I’m going to be honest – I still cannot look at photographs of friends’ newborn babies without getting angry, and I hate myself for it. I can’t bring myself to “Like” Facebook posts where I can see fingers, and the mere sight of those damned Anne Geddes photos of babies in flower pots makes me hot with rage.
My rage is for my son’s surgeries in the past, and the one he’s about to have at the end of this month to separate his fingers. My rage is for the fact he’ll never be able to bend his fingers like mine when he wants to play the piano or hold a pencil. My rage is for the surgeries on his skull that he’s going to have over the course of his childhood. It’s for the looks and stares he will have to endure, and for all the doubters who will write him off before they give him a chance.
Most of the posts on this blog over the last year have been pretty positive. I try to keep it that way in case new parents of a child with Apert syndrome come across the blog are looking for comfort or perspective, but the reality is, I suspect a lot of people in my situation probably have bouts of anger and depression over the cards their child has been dealt. Thank goodness for the internet and the presence of an online community of people who can lend me their experience and wisdom. I’ve had a lot of comforting words sent my way by parents who have gone through everything I’m going through now, and for that, I thank you (especially you, K.M.S. – you have no idea how much everything you’ve told me means).
Maybe the anger I feel is what I need to carry me through the doubts that float around my head all the time. Perhaps it’s the fuel I need to fight for my child when the public system is inevitably going to try to tell me he can’t do this or he can’t do that. I don’t know.
In those times, I look at his little face and his hands and wish I could switch places with him and take away all of his pain, all of it. All of it. Right now, tonight, I hate this world, but tomorrow, when I pick him up and he lays his sweaty curls on my shoulder, hopefully things will be alright.
As I mentioned earlier, we’ve noticed that one of the things that makes Marshall happiest is music. He does a little dance when he hears music, he’s mesmerized when I play the piano or ukulele around him, and a few times a week, he’ll sit on my lap at our piano and pound the keys for fifteen or twenty minutes at a time.
On August 30th, Marshy is going is scheduled to go into Sick Kids for an operation to release his fingers. This eight-hour operation is a big one, and it is going to be really interesting to see how he reacts to having fingers for the first time. His fingers will never work like mine – he won’t be able to make a tight fist, and his thumb is shorter and at an angle – but this should still make an enormous difference for his development.
I’ve never thought about how lucky I am to have my hands. It will be exciting to watch as Marshall discovers his.