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Tuesday, June 9, 2009

What is Okay Anyway?

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So, what do you tell someone who asks about your daughter who is not doing all that great, and whose health continues to decline, but who is "hanging in there" nonetheless? I don't know what the answer is, so I just say "she's doing 'okay.'" She's not moving much, so a lot of the time her stomach hurts from constipation. She cried out more last night and today than I've seen her do in a long time because of what I'm assuming is stomach pain. Usually I can get her somewhat regulated with meds, but I guess I haven't done a very good job lately. I hope to get her back on track within the next day or two. Everything I feed her is pureed, and I'm having to make sure the spoon stays in her mouth long enough for her to get the food off without it coming right back out. I realize that proabably doesn't make much sense, but I don't know how else to describe her eating. She looks very thin. There's no toddler fat on chubby cheeks or pudgy bellies. Her muscles are mushy and she has no strength to hold herself upright unassisted for more than a couple of seconds. Of course, she is blind, so she doesn't see the beautiful faces, the bright sunshine of summer, the pretty flowers in bloom, and when she looks in my eyes, she doesn't see how much I love her. I only hope she feels it. I didn't realize how down I get when I explain Emma's condition to whomever it is that asks. I guess when I speak aloud what she is and isn't doing I get a clearer picture of how she really is...she's not improving...she is getting worse day by day, and when we're with her day in and day out, we lose sight of her decline, I guess. This thing called Batten Disease is ugly. I could ask "why," but I know I will not receive an answer this side of Heaven. I have learned many lessons though. I wish I could have learned them differently, and not at Emma's expense. I'm learning not to judge. I didn't realize how quick I was to judge people until recently. You can't know what a person is going through or why he is acting the way he is if you haven't been in his shoes. I have learned there are a lot of people in this world who are hurting, and they need the promise of prayer, just as we have been given. I have learned life is short, enjoy the time you have now, and quit putting things off until tomorrow. I have learned I'm not a very patient person. I would like to say I don't get angry or frustrated with my other children, but that would be a big fat lie. I'm learning how to better communicate with them so I don't have to constantly hear bickering back and forth. Maybe I'll get that lesson down before summmer's end. I wish there could be no more pain in this world, at least for babies and children. It's so devestating to watch a child suffer, whether it be from a terminal illness, or hunger, so I'm learning to pray more and do what I can to help. I've learned to smile at people more, and look people in the face, especially those who are ill or a caregiver of someone who is ill. Everyone wants to feel...something. I wish so very deeply that I could have learned all of these things without my baby girl getting sick, but I don't know if I would have. God promises that nothing we go through in this life will be wasted. He will use everything for His good.

I don't want to sound like I don't want people to ask how Emma is, because I do. I want people to talk about her and mention her name. I want people to remember how cute she was and still is. I want people to share memories of her with us. If you have one, feel free to leave it in a comment. I need all the memories, because I'm forgetting more and more each day. I hate that. I wish I had a better memory.

Thanks for hanging in there with us...
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