It’s 7:20 on a Friday morning as I type this. Marshall and I spent the night at the hospital doing a sleep study. The hospital wanted to try some sort of high-flow oxygen machine to see if it would alleviate some of his sleep apnea between now and whenever he gets his surgery to have stents put in (at the moment, in January). I don’t know how Marshall feels as he can’t talk yet, but I feel like I’ve been hit with a sledgehammer in the head. I don’t think the therapy worked, but we’ll have to wait for the results. He sure as hell didn’t sleep better with all of those wires attached to him, and it must have been tough for him to have the continuous stream of air forced into his nose. I managed to get a bit of sleep, but I also feel like I could sleep for another twelve hours straight. Thank goodness for coffee, right?
After Marshall was born, a lot of people told me that Marshall would teach all the people who are in his life so much. That made me really, really angry. Why should MY CHILD be the one who has to carry the burden of teaching people lessons about life? What kind of responsibility is that to give my child? I still feel like that. I HATE the thought that sure, some people are going to become more empathetic or caring because of their interactions with Marshall, while Marshall is going to have to put up with people staring and pointing at him because he’s different. Bridget has already had a little girl come up to her at a playground where Quinn was playing and ask why Marshall’s head looked different. She was asking innocently and without any hint of malice, but when I heard the story, I started crying anyway. I should get a job in soap operas.
The truth, though, is that this experience of raising Marshall and learning about Apert syndrome has taught me a lot about myself and the world.
- I’ve learned to be a better father to Quinn. I think Marshall’s rocky start to life has made me appreciate Quinn’s good fortune and health. Oh, don’t get me wrong – it’s not all roses between me and Quinn (see below!), but in those times when I get to devote all of my energy and attention to Quinn, we’ve had some amazingly tender moments.While I’m on this point, I want to thank the woman on the College streetcar on Wednesday night at 6:30 who said something to be quickly before getting off at her stop. Quinn and I were talking about his day at school, what it meant to buy a birthday present for someone, and how it didn’t mean we had to get things when it comes to our birthdays. I was just following what I really believe and having a great talk with Quinn. The stranger, who I guess was sitting behind us, leaned over and said, “Wow, you are an amazing dad.” Whoever you are, thank you for your compliment. It was a surprise and touched me so, so deeply. I have been thinking about your words and holding on to them during the tough moments for the last few days, and will continue to use them as encouragement.
- Quinn is going to be an amazing and protective big brother. Hey, you never know how sibling are going to be. I know plenty of people who don’t talk to their brothers or sisters. It’s still early days, but Quinn already knows Marshall is different from other kids. He loves holding his little mitten hands. He starts and ends each day with a loving hug and kiss for Marshall. He gets upset when he thinks about Marshall going to the hospital, and wants to spend time with him.
- I cannot look ahead to the future right now – tomorrow is too far away. Taking it one day at a time is such a cliche, but that’s all I can handle at the present. Every day for me has turned into a battle to make it through the day and to bed. I definitely don’t spend enough time with Quinn and Bridget because I’m so tired all the time. I was never a particularly patient person, and being around me now is like walking on eggshells for the rest of the family. Thank goodness for grandparents who have been so invaluable in helping with cleaning, cooking, and childcare whenever everything gets too crazy.
- There has to be hope. Even with the struggle mentally to make it through each day and night, there has to be some hope for the future. Out of the hospital for a long stretch between June and November, Marshall is slowly catching up in his development. Nothing feels better than coming home after a tiring day to find him in his Jolly Jumper near the front door. He hears me and jumps to turn himself around. And then there’s the smile and twinkle in his eyes when he recognizes me.
- The school system is moving in the wrong direction. Class sizes getting bigger, special education programs folding, and labour negotiations taking forever every few years in Ontario. As a society, whether or not you have kids, you have a vested interest in children getting the best education possible. This is not the area to save money. These are the future leaders and citizens of our world. I fear for Marshall’s entry into the school system if he needs extra support. If you are a parent of a child with special needs, do not let the school system push you around. Speak up and get your son or daughter the education he or she deserves.
Just as I’m about to post this, I’ve received an email from Bridget that the results from last night’s study are in: it didn’t work, and his sleep apnea is worse than it was a few months ago. Hopefully, the surgery date is pushed up from January and we get Marshy more of what we all need – air.