Sunday, January 4, 2009

Some Random Thoughts for Tonight

It's after 11pm, I wanted to be in bed by now. I have a new magazine to read and I wanted to read more of the 3rd in the Twilight series tonight. It seems, though, a mother's job is never done. I packed Jessica's lunch for tomorrow, did most of the dishes, fed the animals, tidied up the living room, laid out clothes for tomorrow, found Jenna's black socks she needs for work, tomorrow, folded laundry, and sat down here to do some work... but instead I am reading blogs and message boards and answering personal mail. Work can wait until tomorrow as I am still offically on vacation until then. At any rate, after doing all of the above, I realized that, at 11pm, I had not yet had dinner. I guess it's too late now, so I will pass for tonight.

Tonight my thoughts are on my girls, mostly. Specifically Jenna and Hope. They are my oldest (at almost 17) and my youngest (at just 2.5). Jenna has bipolar disorder and mild autism. She also has dyslexia, dysgraphia and executive functioning disorder. The littlest of things can set her off. The end result is never pretty. Tonight she wanted to go to the grocery store to get a new eye liner and some eye shadow. Well, she wanted to go Friday but was told no, then asked if she could go last night and again, was told no. So finally it was time to go, but she had to put up with me buying groceries too. Normally between waiting three days AND then having to deal with the time consuming grocery shopping, she'd be a mess. She wasn't. We actually had FUN. My husband was with us and at one point he said, do you realize you can be heard 3 aisles AWAY? We were giggling in the greeting card aisle because two cute guys walked by. LOL! BUSTED! But seriously, we have had so much fun together, even in the grocery store. I'm looking forward to our mall trip next weekend. I just hope my tattoo on my foot is somewhat healed, because wearing shoes has been a challenge lately!!

I've also been thinking of Hope a lot lately. Hope has her transition meeting tomorrow for services. I'm praying they will be willing to provide in home services after age 3, due to us homeschooling her as well as me not driving. I guess the worst that will happen is that they won't and we'll have to take her to a clinic for therapy. I don't want to do that, but it is what it is. Not only is this on my mind, but also her disability in general. It is minimal and I know that. I am fully aware that she can do many things that most kids with CP can not do. She can walk unassisted. She is learning to communicate by talking and by signing. She can pull her pants up and down and can remove her shirt, but can't put it back on....she can even change her pull up (yes, potty training is soon in our future). She does SO many things that it's sometimes hard for friends and extended family to even remember that she does have a disability. Yet, she has difficulty holding a backpack on her back, she has difficulty navigating stairs. She walks with a funny gait. She swings her right arm while waking. She has one crossed eye. She talks funny. When imitating someone on TV or someone here, she can't raise her left arm the whole way up, only about half and that's with effort. She tires easily. She has joint pain and stiffness. She can't sit on the floor comfortablly. In fact, she prefers not to sit at all, she'd rather stand.... and yet, I realize these problems are SO MINIMAL. So tell me, why do they get to me so badly at times? We were playing with her in the hotel room, on our trip to Florida. We had her Dora backpack with us. The kids put it on her back and had her walking out the door like she was going to school. It kept falling off her left shoulder. She didn't have the strength to keep it there. I cried. She looked at me and wanted to give me a hug and all I could see was her horribly crossed left eye. She was tired and when she is tired it is very noticable. Not as much when she is fully awake. I teared up. When she ran down the hall to catch up with her siblings, she had 'noodle legs' and just couldn't run. she kept tripping herself and falling. She needed help. I just couldn't watch. :-( Then relatives who have never met her began with the questions. Does she have a limp? Is her eye crossed? Why doesn't she reach with her left hand? She holds things funny, etc. etc. etc. They knew she has CP but just didn't put two and two together and were asking these questions out of concern. I got angry. I didn't want to get angry. It is what it is and I realize that...Honestly, I do.

And I sit here and feel so selfish. Hope could be 100x worse. She could be. And I am thankful that she isn't. I truly am. I knew when I got her she wouldn't be perfect in any way, that she'd have a limp, a funny gait, have a crossed eye, and so forth. This isn't new to me. But when I'm looking at my most precious baby girl and seeing all these things looking back at me, I want to wave a magic wand and make her perfect. I just do.
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