Mary is hurting, we know that. We also know that her hip and knee and ankle can not always support her and give out without notice, dropping her to the floor/ground. However, we have been noticing that she is using her illness to her advantage. If she wants to stay inside and be lazy, she says she isn't feeling well or that she is hurting too bad. She really just wants to use the cellphone and talk to her friends. If she wants to get out of chores, she says she's hurting too much. Not that she's not sore, or not hurting, because she is, but she isn't in pain, if that makes sense. Some days she can do really well. She can walk and play and move around really easily. Other days she is really down and out for the count. Her body will not hold her or allow her to move hardly at all. Those days last longer than the good days, for sure. But on days when she can move, she isn't wanting to. (I am sure this is absolutely normal for a 10 year old little girl with a disabling disease though.)
Today for example, we had them do chores because they have been super slackers when it comes to picking up after themselves. I'm talking dirty clothes EVERYWHERE, trash just thrown on the floor, toys in every nook and cranny, art supplies where Aiden can get them, toys he can swallow left out, etc...Just really blatant about it. Well, they complained the entire time and sat around waiting for me to tell them each movement to make (ie. take that sock to the laundry room, put the trash on the floor in the trashcan, etc), just things to make it more difficult for me. I know they were hoping I'd get aggravated and say "I'll just do it, go do whatever you want.", but they didn't get that reaction. Oh, no.
They got extra chores to do. And when the chores were done enough that we could finish up tomorrow, we told the girls they needed to go outside now and play or sit on the swing or on the front porch, it didn't matter what they did, they just had to go outside.
Well, when you tell our girls that they have to go outside (or do anything), it's like we just told them they have to go run a marathon. They slump their shoulders, they whine like babies and they pout and/or give mean looks. Then when that doesn't change our minds, they get mean to each other and take it out on one another.
That's what happened today. It ended them all on the couch and on restriction. No tv, no electronics, no books, no art, not a thing. Sitting on the couch, that's it. The older girls are asleep now...on the couch and the recliner. Kat is still awake, (and she got to have the tv back for a little bit). I explained to them why they were in trouble, I explained what we expect out of each of them and I let them know up front that all they are owed from us is food, clothing, shelter and our love. Everything else they have to earn. Everything else is a privilege and we don't have to give it to them. I woke them up for dinner and they refused to eat, like they were somehow hurting me with their defiance. LOL I ate dinner, and it was yummy! I made breakfast for dinner, a family favorite. :P They missed out.
We tried explaining to Mary earlier that just the way her wrist locked up on her, her hip, knee and ankle can and will do the same thing if she continues to refuse to use them when she can. It's understood that there are times that she just can not use them, but when she can, she can't be lazy. She has to exercise while her body allows it. We told her that she can make it so that she isn't able to get out of the wheelchair at all. If she gives in to this disease and just gives up, so will her body.
I got a job today. It's only part time for right now, and it's minimum wage, but it's an income. I'm thinking I'll join LA Fitness (if money allows. It's the cheaper of the gym memberships that have a pool) and beg them to allow Mary to come in with me when we do Aqua aerobics. I know it will help her and it will be a fun way for her to exercise. I think that you are supposed to be 14 to be allowed in, but I'm going to try my best to get them to let her in due to her need. And then this summer, hopefully my Aunt and Uncle will let me bring her to their pool, if they decide they're opening it. (They stay busier than anyone else I know, so I don't know if they will be opening it this summer).
I have to get her moving, somehow, someway. I know it can't be easy to be a 10 year old facing this daily. But she can not give in, I won't let her. I am stubborn and hard-headed enough for the both of us. She will get through this and she will make the best of it. I won't let her lose her happy self. I'll do everything I can to help her through it. And hopefully be successful at also teaching her how to carry herself through it.
Clara was complaining about a dull aching in her knees today too. We went to pick up Mary's medicine today and they said it's still not ready, two days later.... :/
Please keep them (and our whole family) in your thoughts. We could really use the support that's for sure.
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