All Gain, All Pain
I used to get so excited about any little bit of weight gain Oscar achieved. I mean, imagine — until he was eight months old, he took one ounce of food at a time by bottle. ONE OUNCE — and it would take him over an hour. Eating was not his strong suit, and getting a g-tube put in was literally a life saver. Kids like that are diagnosed with “failure to thrive”. Failure. To. Thrive. It would be months before he grew out of preemie clothes, and Oscar pretty much stayed on track with being a size or two below average for about three years. When I took him out of daycare — and into isolation — his health improved tremendously, meaning there weren’t any setbacks with weight gain due to illness. Illness that would cause vomiting, diarrhea, the inability to hold anything down, coupled with doctors’ orders to hold his feeds for various safety reasons. We would usually expect him to lose a couple of pounds every time he came home from the hospital. It was such a frustrating cycle. Luckily, we have been out of the hospital for emergency visits for almost a year. And the kid is huge. HUGE. I went to Target yesterday to basically buy him a new wardrobe because nothing fit. He was hanging around the house looking like Winnie the Pooh — you know, crop top, no pants. I got pretty emotional throwing all those new clothes in my cart. He’s never grown so much so quickly. It was a happy moment, a victory. He’s thriving. But his growth also comes with some tough pills to swallow.
It’s kind of like that feeling when some dark clouds start creeping after you’ve found the perfect quiet, sunny spot at the beach. Imagine…you’ve applied your sunscreen, laid out your towel, cranked up your speakers, and gotten super comfortable — on the verge of a nap. The warm sun kisses your back, ocean waves crash in the distance, and a soft breeze rustles the palm leaves. And then, a single raindrop hits your shoulder. It’s like that.
Here’s the thing. This is going to sound like I’m whining and complaining about my son making progress. This is not the case. This is me, being terrified, worried, and anxious about what my family’s future is going to look like. This is real. And, as you’ve seen in my writing before, there is a constant mix of emotions when you’re in a situation like mine.
You see, with Oscar weighing close to thirty pounds, every day it gets harder and harder to carry him. To sustain carrying him. He doesn’t really “help” in the sense that he is uncoordinated and his movements tend to be spastic and disorganized. This is because he has what is called “Agenisis of the Corpus Callosum”. This is when the part of our brain that divides the two hemispheres is thinner than it should be, making it harder for the signals from the brain to reach the body. In real life, for us, it looks like this:
Oscar has trouble using his left side. (Think of when someone has had a stroke, and one side of their body needs rehabilitation because it has lost its strength. The brain has been damaged and can’t send signals to one side of the body. ) He didn’t look to the left or turn to the left for over a year. This has improved with therapy, but we still have a ways to go.
Oscar throws himself backwards very forcefully — usually while you are holding him. He does this for different reasons:
He uses contractions of his muscles in his legs to adapt for movement. He has a weak lower back and can’t hold himself upright against gravity for very long. He refuses to lie on his stomach, and is a magician in getting out of any position where he is kneeling or facing towards the floor. So, he throws himself back because it is the only way he knows how to move.
It also seems to be that he thinks this is funny. So. There’s that.
Because he has been repeating the same forceful movements for three years now, he is very STRONG. His legs, upper back, and abs are the muscles he uses the most to sit, scoot on his back, or turn from side to side. He kicks a lot and uses the momentum of kicking while on his back to move or scoot. He also kicks to play with us, because he’d rather use his legs and feet than his hands. Yesterday I got kicked in the throat. Hard. It’s a behavior we have to minimize because he can and will hurt someone — not intentionally, of course, he just doesn’t realize his strength. This brings up the interesting issue of disciplining my child. One could argue that he doesn’t know what he’s doing. But I’d rather assume cognition and capability, and therefore, discipline him to minimize the kicking. And, when listening to adults with disabilities speak about their childhood, more often than not I hear of them wanting to be disciplined - wanting to experience everything that comes with childhood instead of getting special treatment. It reinforces a sense of normalcy, and I want to give that to my son. So, you might see me very forcefully say “NO” when he kicks me. And if that doesn’t work, you’ll see me put him in his room for a few minutes. I’ve never had to discipline him so far, so I’m still figuring this out. It’s weird. I digress.
He does not have strong arms as he refuses to use them. He doesn’t really have a pincer grasp, and will not tolerate anyone trying to do hand over hand. His left forearm is very tight and he can’t turn it without being in pain — as evidenced by his reaction when you try to do this.
Oskie isn’t potty trained — nowhere near it. Other kids his age are using a toilet, or at least aware of when they need to. This is not the case for us, and I have no idea how long we will go before any sort of potty training happens. Bath time is difficult having to bend over and lift a heavy, slippery baby out of the water. Oskie still kind of fits in his plastic infant tub, but one day he won’t. And we’ll need a roll-in shower, or a special bath chair because he definitely won’t sit up in the tub on his own. I’ve tried. He gets extremely off balance, throws himself backwards — not safe — and gets scared because he has nothing to grab onto in the wide open tub space.
These things are hardly noticeable to an untrained eye. But day to day, they make a huge impact on our lives. My husband, Chris, and I worry about his independence, we worry that our house isn’t accessible enough, we worry that we will eventually need a part to full time aid. We didn’t plan for this. It wasn’t our dream to have a stranger living with us. We built our home while I was pregnant, and didn’t know we would be facing these challenges. Otherwise, the layout would have been so different. So now, after all the stress of home building, we will probably have to do home renovation. Or move. Again.
My neck and back are a complete wreck. The hump I have in my neck won’t go away because I keep having to repeat the same movements all day, everyday. (And I have four different fitness certifications. I know what I’m doing, and use good form for everything.) It gives me terrible headaches and I’ve been living on Aleve. The pain radiates down my spine, my fingers and toes get pins and needles in them. The last time I got a massage, I felt like I was being tortured and was unbearably sore for a couple of days. The last time I went to a chiropractor, I couldn’t move for the entire next day. Thankfully, my mom happened to be in town and could take over the childcare — I couldn’t move my head or my right arm and just had to sleep it off. I can’t get to a chiropractor or masseuse or PT regularly at the moment, so I just have to wait. I worry about my physical health. I’m working out on average 5 days a week to keep up with the physical demands I currently have and will need in the future. I incorporate deep stretching as much as possible. I’m doing my best, and it never feels like enough. I frequently don’t feel like I’m enough as a mother, but I also know I have limitations and special circumstances. I also have to do a lot of WAITING — mostly for services to kick in.
I know I’m not the only mother experiencing this. But I may be one of the few who is talking about it. I think women are afraid to come off as if they are complaining or they’re afraid to be seen as ungrateful.
To be clear, I am so grateful for my life and for my son. I have virtually nothing to complain about. But I’m allowing myself to talk about the things that I worry about, that cause physical and emotional pain. I’m addressing it. And I don’t know how to fix it, and I’m not asking for anyone to fix it. I just want to normalize talking about the hard stuff.
For those of you reading this who have children with disabilities, I hope you know that it is totally normal and okay to feel both sad and happy at the same time. Terrified and excited. Conflicting emotions about every single thing are kind of an occupational hazard. For those of you reading to get more insight about families like mine, thank you for being understanding and for taking the time to learn about us as whole people, beyond diagnosis. You are making our world a better place simply by having read this article.