I can still vividly remember Nikolai Borschevsky scoring the most important Toronto Maple Leafs goal of my lifetime. I was still optimistic at the age of seventeen that I would soon see my Leafs win the Stanley Cup. He scored the series-winner against the favoured Detroit Red Wings, and the city went wild. Disregard the fact that they didn’t end up winning the Cup that year or any year since; for at least one night, the city believed anything was possible.
In the years since, we’ve learned to adjust our expectations. The team has very occasionally been decent, but it has mostly been filled with disgust and disappointment. In mid-90s, after Borschevsky scored his goal, hopes ran high each year. Steadily, expectations have been eroded so much that some seasons, I’m surprised they can find twenty guys that can skate. I’ve learned expect little, and hope to be surprised.
This is the opposite of how I want to be with Marshall. I have been telling myself that he is going to surprise people, he’s going to surpass all expectations. To be clear, I don’t know yet what those expectations are, and doctors have cautioned us that it’s still too early to tell what’s going to take longer to develop or what’s going to be a challenge in the coming years. Regardless, I have refused to treat him differently than I treated Quinn. I take him out in the stroller every day for long walks and we sit on benches and have a bottle of milk in the warm, sunny weather. We’ve been reading books together each day, and I see his eyes darting from page to page, animal to animal, colour to colour. We roll around on the floor and cuddle, we sing songs, and I tell him how much I love him.
Yet through it all, I still find it so, so hard to ignore the voice in the back of my head that cautions me to be guarded in my optimism. Personally, I’ve spent my life expecting little of myself and just coasting. I’m tired of being pessimistic all the damn time. I want to pour my optimism into Marshall’s life and dream of all the incredible things he’s going to do, just like I have hopes and dreams for Quinn.
So, it’s been a good, if tiring, few weeks since the school year ended. I’ve been home with the boys, taking Quinn to his half-day summer camp in the mornings and picking him up at noon, spending the intervening couple of hours strolling around the neighbourhood with Marshall, and then keeping them both happy and fed each afternoon. I had almost stopped thinking about the nightmarish start to Marshall’s life in February.
Today, we took Marshy to Sick Kids for his first appointment with his neurosurgeon. Eventually – likely in the next half year or so – he will have his first cranial surgery. Today was a chance for his neurosurgeon to meet him and do a quick check on his growth and progress. (For any doctors reading this, I want to implore you to remember that parents that are seeing you are probably incredibly anxious and worried. Please, please try and throw something positive into the conversation. Anything. Tell me he has a cute chin, or that his fat cheeks are delightful.) Anyway, the doctor confirmed a worry we have had (I’ve actually been avoiding thinking about it or hoping it’s not true) about Marshall’s apparently lack of focus on our faces. So many things could be causing this, and now we’ve got another ultrasound lined up, and an MRI which will require sedation. His condition has so many factors that it could be a lot of things, and I suppose it could be nothing. Still, the appointment crushed me.
Tonight I gave my little Marshy his bath. I always get in the tub with him, as I did with his brother, and he has slowly begun to enjoy (I think) his baths. I held him to me and cried tonight, sorry that I couldn’t protect him from all of his hardships, sorry that he would have to add another few procedures to his growing list of hospital visits. He leaned his head against mine calmly, and I found comfort in his pillowy cheek as it rubbed up against my wet face. I still weep and scream about the unfairness of the situation; why him? why anyone? But I know it does no good.
There are a couple of groups on Facebook – closed to the public for good reason lest the trolls begin commenting on the photographs – open to individuals with Apert Syndrome and families who are raising an Apert child. I’m amazed at the number of members in the groups; in the larger one there are over 1500 members, quite a number given the rarity of the syndrome. I’ve mentioned before that I find it hard to read updates posted to the group. I’m still too much of a coward to read the posts without periodically crying or despairing, even though many of the messages are beautiful.
There are people with Apert syndrome who frequently post in the group, and one in particular reached out recently to Bridget after reading about our experiences. Her message was one of success, triumph, and independence. She has achieved more than I have in far fewer years, and that gives me something to hold on to. I am so grateful for her unsolicited sharing of her understandably private life.
Perhaps my expectations need to change a little given what Marshall is facing. It will probably take him longer to hit milestones such as crawling and sitting up, although I still don’t want to believe it. I need to find a balance between my hopes and reality. I know it’s not my life that he’s living, and my job is to be there for him and to show him love and support. It’s just so hard to watch it all unfold feeling so powerless.
Marshy, I’m not giving up on you, and I’m sorry if you ever see me looking sad. Sometimes, I just need to let out all of my fears so that I can be strong for you. I believe in you – far more than I believe in the Leafs.