I definitely should be sleeping. I spend a notable amount of time every day complaining to my husband about how tired I am. I can hardly understand how I still function as relatively well as I do, but I couldn’t possibly sleep right now. How could I? Who would help our daughter then? Who would find out which therapies are getting results and which ones are dangerous, poorly researched, money grabbing risks? Who would figure out the dose of medication she needs? The doctors don't know.
I send emails now, when I’m tired…..I read blogs, watch YouTube videos, email contacts on websites about treatments that scare me and cost way more than we can afford, but know we will find the money for….somewhere….if only we knew that it would help her. I get excited, hopeful, disappointed. I don’t think I ever turn off the CP part of my brain. When I am making breakfast for my son after his sister (the one with CP) has gone to school, I’m thinking about it. When I am having conversations about other things, or reading a book to her before bed….when I wake up to feed the baby at night or to the alarm in the morning…even if some other thought comes to mind, the CP thought wastes no time attaching itself….even if it’s dangling far behind like a kite tail, it’s there and I can hear it, feel it's weight pulling at me. It’s making me a little crazy just to realize that I NEVER stop thinking about it, but it’s true.
Maybe I think I’m supposed to, like it’s my occupation to fix this, or at least spend my entire life determinedly trying to fix as much of it as I can. Then there’s the guilt, that I haven’t done a good enough job thus far and regret over why I didn’t learn certain pieces of integral information sooner…not that it was even within my control. Thoughts in my head are spinning so fast they are starting to bump into each other like a pinball game…..
I’m in a panic now….a very calm and collected panic. She is almost six and she’s a disaster. Her hip has started to make a snapping noise here and there; x-rays say mild sublux….not to panic….well I’m freakin’ panicking! In the world of CP I guess it’s considered normal so in that sense I should remain seated and await further instructions, but she’s five….we are already having to develop a plan of action to prevent….sorry, I mean postpone…..her hip surgery. Maybe we can make it to her late teens or somewhere into her twenties. She’s five. She lives with pain every day. She gets 12 to 15 painful botox injections every four months to partially paralyze her muscles. She asks me when she might walk….she says it’s ok, she doesn’t want to anyway. She’s five. Hip surgery? Shouldn’t that be more like 75? What is wrong with these people who think I’m going to be ok with this? I don’t accept it. They mean well, they believe in what they do….I’m starting to question their methods a little. They look at this as a muscular issue, nothing is wrong with her muscles, it’s her brain trying to communicate with the muscles that is the problem. So if they know that then what are they doing?
I will not sit back and accept that she will need hip surgery and maybe rods in her spine because (and I don’t even want to get into this because I can’t take it, I can’t even let myself imagine it for one second or it might make me completely fall apart) her scoliosis has already started.
So to at least feel like I am doing something, I order elbow braces and email practitioners and book appointments and email other parents who are technically strangers to ask them about their treatment results. These technical strangers, they are my best friends. They understand me, they live on the same planet, they have kite tails making them crazy. It’s hard when the people that you actually know don’t…can’t understand. I don’t blame them, they just can’t. It does however; really strike a nerve when people think that yes, it’s a little sad that my daughter is in a wheelchair….it’s so much more complicated than just being in a wheelchair. If her only issue was that she couldn’t walk, I’d take that in a heartbeat.
The wheelchair issue alone is ridiculously complicated. First of all you have to find the right type of chair, then the right type of seat. She can’t sit in the regular, basic seat, she needs “wells” and special foams, and different special foams. She needs lateral supports and the hinges scrape her arms raw so we pad them and stick funky socks over top to make the padding look “fun.” Then there’s the head rest, we tried a few, luckily we managed to avoid the forehead strap because she improved her head control just in time. She has a hip belt that looks torturously tight and I’ve offered the “it’s not as tight as it looks and I swear it’s not hurting her” disclaimer dozens of times. Chest straps, shoulder harness. There are like 58 buckles and straps that have to be loosened and tightened every time she gets in or out of the chair. She has a foot strap to keep her from uncontrollably wrapping her leg around the footrest and bruising it, she has a knee separating pommel; it also has a funky sock to make it look “fun” and “cheery.” I don’t find it very cheery, but I pretend I do when people compliment it.
The chair has a super fun tilt function so when she is tired she can lean back and her head won’t flop as much. She has tilt locks so little kids and unsuspecting adults don’t accidentally let her fly forward. She has a neck collar (the kind people wear when they get whiplash) velcroed around her chair handle for the bus and for when she needs that extra support. She has towels that pad part of the arms rests that are never actually down because her arms will get painfully stuck in them. And that folks, that’s “just a wheelchair.” I could write a paragraph or two about the stander (more funky socks!!!) or the walker, or the other walker, the bath chair (my arch nemesis), the car sears, floor seats, elbow braces, ankle and foot braces, hand and finger splints, hip orthosis, leg braces for sleeping. She has two hearing aids and glasses that she never wears because it’s just too much and it’s ok with us that she is blind in one eye, that is the least of her problems. So yes, it bugs me when people have no idea the magnitude of her condition. And yes, there are people worse off than her too, and to them, I am complaining about nothing. I know that.
But, she can talk, after five years of speech therapy and breath support, she is talking more and more and now, even strangers can understand her sometimes. We are extremely blessed; a lot of kids like her can’t talk. That is a whole other realm of pain for a parent. I am not qualified to go there, but I thank God times infinity that she can talk. And so she talks….she tells me about her pain, she asks me to scratch her ear, her eyebrow, her toe……She thanks me compulsively for helping and taking care of her. I suspect she has a lot of anxiety. She must think, what if we got fed up with having to do so much for her? Would we still love and want her? She thinks she’s a burden at five years old. I always tell her she doesn’t need to thank me, but she never stops. She asks me questions I don’t know how to answer, I don’t want to answer. I’m so grateful that she can talk, but sometimes it’s hard to hear her pain.
So now I really need to be sleeping. I feel like….I feel really awful, my body keeps going because my mind is somehow strong enough to will it on. I’m borderline burned out and I haven’t rested in almost six years and I may never rest again.
We are going to try ABM therapy I’ve decided. I don’t care that I can’t handle driving over an hour to the appointment in our non-accessible van, often alone, with my breastfeeding baby that I can’t leave because, well, he’s breastfed. I will be exhausted mentally and physically before I even get there, but we will go every week and pay way too much and as long as we see some positive change, it will be worth it and it will give me enough of what I need to keep going.
I can barely do this, but somehow I’m fooling everyone into thinking I am doing it well. I guess that’s how we all feel. All of us special parents. I get angry when people want me to do things, to places, normal people activities... anything really. I know it’s irrational, but it just reminds me that they have no idea what I am dealing with and it's so exhausting trying to politely explain so many times. They see a girl in a chair that can’t walk or use her arms. They don’t see what’s dangling from my kite tails. They don’t know about preventing joint contractures and scoliosis. They don’t die inside when they watch the look on her face when all the kids at the party leave her and she desperately wants to play with them. They don’t know that she goes home and cries about it for 45 minutes in my arms that night. They don’t know that I literally cannot handle anything else in my life but her, yet somehow I do.
I need to sleep, I can barely get out of bed in the morning as it is. I rarely sleep. She is in her own room now and I don’t need a baby monitor, I can hear her if she breathes too loud. I havn’t slept for more than four hours a night since her birth and not more than two hours in a row. I should be dead from lack of sleep, but I need to get this out.
I sound bitter maybe, but I’m not foolish. I know I should thank my lucky stars a million times over, and I do. She is a blessing, a gift, I don’t wish her to be different only that she didn’t have to suffer.
The worst thing, the thing I hate so much that I can’t even give it any eloquent or quirky lead up to sentence. I hate watching her watch the other kids play. Even when she’s smiling I hate it. I hate it so much I want to hurl this computer across the room at the very moment I type this paragraph. I’m so mad that she doesn’t get to be a kid and play or be whimsical. No dress up or silly horse play, making forts out of sofa cushions or friendship bracelets. Nothing. I’m so angry inside all the time, but I make myself forget; except in that moment, when I see the true look in her eye; the one only a mother can see. I’m furious, but I know it doesn't serve me, so I move on.
I should be sleeping, or if not sleeping than doing the hundreds of things I complain about having no time to do; cook, clean, read…sleep! I can’t possibly sleep, I have to fix this. I have to make myself truly believe that I am doing something significant, that it could turn out to be the big break that I’ve been praying for. I don’t necessarily think she’s going to be “cured” but to see even the slightest real improvement, it’s worth the hundreds of hours….. and miles and miles of kite tails.