It’s been a while since the last post. Sometimes, no news is good news, and in this case, that is exactly how it has been. With his syndactyly release done, Marshall has no major surgeries scheduled in the near future. His hands continue to go through the healing process, and while he screams and fights me when I massage his fingers to break down the scar tissue, he is slowly learning to use his hands. It was pretty amazing to see what he was able to do with just his thumb and his four fused fingers, but now he is grabbing things, dumping toys on the floor, and just the other day held my hand while we went for a short stroll.
Yes, that’s right – he’s walking. About two weeks ago, he finally took the plunge and let go of the walls and furniture and since then, he has been unstoppable. He’s already quite steady on his feet, and of course he’s fearless (what’s a few falls when you’ve had three surgeries, right?), all of which means the cats are in trouble. As soon as he sees Wallace or Indie, he makes a beeline for them, hoping to pet their soft coats and give them a sloppy kiss. The cats, on the other hand, don’t seem to be quite ready yet for the saliva bath.
And as usual, Marshall continues to be just about the happiest kid I’ve ever met. Laughing, smiling, and looking at us with those twinkling eyes – it keeps me going on tough days.
A few days ago, Bridget repeated something she has said a few times in the past twenty months, but I never gave it much thought until this week: “It makes me sad that he doesn’t look like his family. He looks like the other kids with Apert, but not like his brother.”
It’s undeniable. For one thing, he has the hair I’ve always wanted – crazy curls going in all directions. I would kill for hair like that (and yes, I know that’s something only people with straight hair generally say). Bridget used to have very curly hair, and Quinn had it briefly as an infant until we cut it and it never grew back the same way, but now both of them have fairly straight hair. And despite a couple of relatives that have oddly curly hair, I sport the standard East Asian head of dark, straight strands. Marshall has the standard Apert eyes – slightly protruding because of the shallow mid-face, which makes his eyes appear very large. His brother’s eyes look more like mine. It is true that in family photos, Marshall looks very different than Quinn, and I never processed that until now.
It’s probably due to the fact that I knew he looked different than the average child because of his syndrome, but I never thought about that difference in comparison to the rest of his family. He’s adorable and sometimes, when I let go of my anxiety, I know he gets looks because of his cuteness rather than his differences. One day, I wonder if he’ll ask why he looks so different than us. It’s inevitable, I assume, and I hope we’re able to answer with facts, compassion, love, and empathy.
There is certainly a “look” to children with Apert syndrome. There are certain physical features that most – if not all – share, so on Facebook, when someone new to the Apert group posts an introductory message, Bridget and I often share a knowing glance or nod. The fingers. The eyes. The shape of the head. The mouth. This happened to me once months ago at the Hospital for Sick Children when a mother approached me to ask if my son had a craniofacial syndrome. She was there with her slightly older son, who had a related syndrome. She knew immediately that Marshall had one of a couple possible syndromes.
I’ll go back to something I posted at the very beginning, something I’ve brought up once or twice since – would I wish away his health complications if I had that power? If he didn’t have Apert syndrome, Marshall would likely look like Quinn. He would look more like a combination of Bridget and me. He wouldn’t, however, have his perfect Marshall smile and his perfectly mischievous little glances at me. It’s certainly selfish of me to think this because he would also not have to endure more surgeries in two years than I’ve had in forty, but since I don’t have magic powers and a time machine, I’ll take this Marshall any day of the year, thank you very much.
Through this blog, a few readers have told me they randomly found it and shared some experiences with me. In some cases, they tell me about relatives or friends who were born with Apert syndrome decades ago, and others share their very recent experiences. To all of them I say thank you opening up to me, and for sharing your stories of hope and love with me and my family. The world is a scary place – scary enough without worrying how and if it will welcome your child who looks different, but all of you make it a bit less scary and a filled with a little more love.