Most days, we are so extremely grateful that Joel is who he is. The viral infection that caused his cerebral palsy could have done so much more damage than it did. He could have been left without sight, with a twisted spinal cord or dependant on a feeding tube. We are thankful that he is no pain and that he is such a happy, smiling little guy (young man now, I guess).
Still, there are some days I could just cry over the life he has been dealt. And I feel terrible about the way we treat him. No, I am not talking about abuse or neglect. There is a ton of laughter throughout every day, he is fed and watered when he asks for it, we change his movies or books whenever he wants and he has enough movies and video games he could probably open his own rental store. What I mean is that we cater to his needs in the easiest way possible and I guess we do that because his needs demand so much of our time.
I feel bad that his choices are so diminished. Yes, he gets to choose what movie he wants to watch next, but that's about all the choice he has. We don't give him the option to pick what he wants to wear...we pick what is easiest to dress him in. Because he needs to see/know all his options before he makes a decision, it would take forever and a day to hold up each shirt and each pair of pants and wait for him to choose (although he has started to say he doesn't like the colour black). We don't give him options for what he wants in his school lunch...we pack what's easiest for him to eat.
He really doesn't get to choose anything...when he has a bath (only on the nights when both Mike and I are home), when he brushes his teeth (only at bedtime and before school) or even when he wants to roll over (before I go to bed and just before he wakes up in the morning). He can't choose if he wants his leg scratched or something picked out of his teeth. He doesn't get to use the phone and call someone when he feels like chatting. He can't just up and decide that he wants to go for walk and away he goes. The kid doesn't even get to look in the mirror when he wants to.
Joel came home from his mom's house last night with a painful sty growing on his right eyelid. Today after work, after holding a hot face cloth to his eye, I asked him if he wanted to see what he looked like. When I held the mirror up to his face, he shrieked with delight at how funny he looked (he looks like he's been punched in the eye). And then I realized that it has been weeks since we last held up his mirror for him to see himself. My god, I look in a mirror many, many times in a day and I have never thought twice about what a luxury it is to do so...that I can check my hair or pop a zit or make funny faces if I feel like it. And little Joel goes days on end without seeing himself.
Tonight, as I was tucking Joel into bed, I made sure to smooth down his sheets, straighten out his pajama pants and untuck the annoying folds from his top. These are all things that bug me during the night and I have the freedom and choice to fix them when I want/need to. I know that Joel is very well cared for and he is obviously loved by a lot of people, but, man, I gave him so much credit for being so darned happy all of the time, despite all the things that he can't do or choose to do. I'd be a big, crabby mess if I was in his shoes (and he doesn't get to pick those either because they always have to be the velcro kind).
Maybe it's the wine I've had tonight, but probably just how you wrote this post, but it brought tears to my eyes. When I think of people like Joel - what he has to deal with on a daily basis - it makes me feel so selfish and spoiled and makes me remember that health and mobility are gifts and can easily be taken away, and those of us that are healthy and mobile in this world should be helping those who aren't. But instead, most of us are "sweating the small stuff" and not seeing the bigger picture.
ReplyDeleteJyl, you are a great person for helping make Joel's quality of life better. And Joel is a great person for letting you realize it :)
That made me pretty emotional. You're very brave and so is Joel. I can't think of not being able to do whatever i wanna do when i wanna do it... i don't know. Seems unreal. He's a good boy. And he's lucky to have such a nice family around him. Don't feel bad about anything, you rock. Bisous de Paris :)
ReplyDeleteI appreciated reading what you wrote. You are a great caregiver to Joel :)
ReplyDeleteI could be wrong in what I am about to say, but perhaps Joel is happy because he doesn't know the difference. Not that he isn't a bright kid who can't see what's going on around him, but if that is the only life he has known from day one, I think it's easier than making that transition later in life.
My hubby has C6 quadriplegia (he can still use his arms, and can breathe on his own, but his hands are paralyzed). He was in an accident when he was 16 and I know he often has frustration with things that he used to be able to do but can't do anymore. Though he has been able to adapt his ways of doing things so he is able to do a lot of the things that he could do before.
I think it is interesting living with someone who has a physical disability. You start to realize all the implications. Most people look at someone in a wheelchair and think their biggest concern is not being able to walk. But they don't think about the little things like not being able to chance positions to regain comfort, or scratch an itch, etc.
After saying all that, I can say I have gone through similar moments of sadness at thinking of all the things my husband has missed out on because of his disability. I think it's only natural to think of these things. Joel is blessed to have such a caring parents :)
you are a gift and so blessed. Thank you for this entry.
ReplyDeleteMultiple replies ahead:
ReplyDeleteDeena! I'm happy to see you on here!
Angie: You hit the nail half on the head :) You are right in that this is the only way Joel knows how to be, so he doesn't know any differently or have a chance to mourn what he used to be able to do. But...even though Joel can't communicate his thoughts very clearly, we notice things that bug him. Like he doesn't like seeing other people in wheelchairs (in movies and music videos). He changes the channel or fast forwards. Although he can't explain why (he doesn't really need to), we realize it's a soft spot for him.
Sophie: I don't want to be thought of as brave. I do what I do for him because I love him and he deserves the best. And I'm sorry if I made you cry :)
Carmen: I have felt the same way too - guilty, selfish, but also thankful for being able bodied. And it is because of Joel I feel that way. And I am thankful that, like you said, Joel has helped me realize that.
Christine: I hope it's okay if I respond on here...God really does choose only the best parents to give children like Joel and Kelly to. Mike's mom echoed the same sentiment at our wedding and it is so very true. We may never know the reasons why people like Joel and Kelly are the way they are...all I know is that I am so very, very lucky that I get to be a part of his amazing little life.