I just realized today that things aren’t going to get better. Nowhere have I ever read, “Well, the first 7 years were tough, then we really cruised through this rare disease thing”.
It hit me when I pointed out a herd of elk across the street from the cabin we were staying at this weekend. Campbell had spotted them, and I pointed them out to Cooper. He couldn’t see them. They were these large, brown creatures, meandering about 200 feet away from us, and he couldn’t see them. I felt sick to my stomach. It’s starting to click. Yep, he fails the vision screening at school every year. Yes, he glasses for an astigmatism. When he wears said glasses, he says everything is blurry, so the glasses sit in a case in his bedroom. He has recently been diagnosed with the beginning of corneal clouding. This doesn’t usually happen to kids, so no one at Children’s Hospital can help us. We’ve got an appointment at University Hospital in November. I feel like we are opening a new can of worms on this one, and I’m scared.
But we aren’t all done with the last can of worms, now are we? Cooper’s (surprise) spinal decompression surgery was June 4. At that point we were told he’d be in a neck brace for 2-3 months. Let’s do the math…. carry the one…. yep, we hoped we’d be hearing we could be rid of that thing by now, four months later. Yet, the latest note from the doctor is something along the lines of “Things look good. Continue to wear the brace for car rides and high-risk activities, do more X-rays in FOUR MONTHS and we’ll review again”. I nearly puked reading that one. Cooper is an active 7 year old boy. I think most of his life is “high-risk”. Riding his bike, playing hockey, football, baseball and soccer in the backyard. Playing sports at recess. Swimming and wanting to ice skate. Participating in PE. Occasional scuffles with his sister. Maybe the doctor didn’t expect Cooper to be such an active kid and that “high-risk” activities weren’t on the agenda. I should feel blessed that he’s an active kid. I should feel blessed he isn’t really bothered by the neck brace. He remembers to put it on, he can do it by himself, and he knows when he needs it. (We’ve been living by the “high-risk activities” rule for a month now already.) At the beginning of the school year, I told Cooper he could take the neck brace off for his school photos. He forgot to, and didn’t care that he had it on. I’m not going to have him retake the picture without the brace. This is real life, and where he is right now. And he’s happy. Apparently Brian and I are the ones who so desperately want the neck brace gone.
All of this swirling though my head as we now have new dates for this summer’s surgeries for Cooper’s hips, knees and ankles. This part sounds like a broken record, I’m sure. This is the exact same place we were last year, preparing for this surgery before we found the severe cervical stenosis that forced the spinal decompression surgery instead of the hips, knees and ankles last summer.
It’s a lot to process. But at the same time, I find myself needing to adjust my filter. When Cooper gets mad at Campbell for something that seems ridiculous, I ask him, “Are you making this sucky?” I try to point out that he can be angry at things, and it can suck, or he can let it go and it won’t be sucky. So at this point I ask myself, “Am I making this sucky?” Yes, it may be less than ideal, but I need to adjust my filter, because it’s not going to get easier.
5 thoughts on “Am I making this sucky?”
I cried at a birthday party this week because there was a bounce house. Ethan has never been interested, and he usually shows little interest in other kids (ASD)…but this time he wanted to be in that bounce house playing with all the other kids (can’t because of MPS). And it broke my heart as I pulled him away each time. And then having to explain to other parents why…when they said “it’s okay, he’ll be okay.” No it’s not OKAY.
So when all the kids went to eat cake, my husband and I went inside the bounce house with him. He didn’t jump around…he just wanted to be inside like all the other kids. He was so happy to get to go in.
Sometimes, no matter the filter…it just hurts.
From an article I read after Inside Out came out –
Embrace sadness, let it unfold, engage patiently with a preteen’s emotional struggles. Sadness will clarify what has been lost (childhood) and move the family toward what is to be gained: the foundations of new identities, for children and parents alike.
First, emotions organize — rather than disrupt — rational thinking. Traditionally, in the history of Western thought, the prevailing view has been that emotions are enemies of rationality and disruptive of cooperative social relations.
Easy to say, I know, but try not to feel bad when sometimes you need to lay in that sadness or anger sometimes. It’s just teaching your mind how to handle more stuff down the line. Be gentle to yourself- although there isn’t a long term finish line there are mini finishing lines everyday that you are already crushing!
I love this. Emotions are organizing me. Thank you for sharing.
Just like how the elks episode hit you about Cooper’s eye condition, this article just hit me about Nysa’s. We recently got a note from school about her astigmatism. Though, I’m postponing my worries till I see a doctor.
But yes, it’s not the big things which challenge me, but the day to day events. Nysa simply loves to dance. She wanted to perform for an annual cultural event in Nov. When I took her to meet the teacher, she showed her best moves, despite her aches and pains. It broke my heart to see her struggle. Finally, she was selected to dance with kindergartners and 1st graders, not the one she wanted. Obviously one of the main reasons was her size. She has been practicing very hard at home, and gives her best during her practice sessions. Every time I see her do that, my eyes get filled with tears. I don’t know what is in store for her next year. But I console myself that she is happy, ‘now’ and that is what matters most. I’ve been teaching myself to live with ‘now’.
Sweet Nysa! I miss seeing your family. Yes, we will take the good moments, one day at a time – no matter how big, or little, they are.