Little things
When you're raising a disabled¹ child, you expect the big things. On a macro level, I understand that Mia can't walk, can't stand, can't really sit all that well (although she's doing better), can't talk beyond a few words, and has, well, issues. I understand all that and have learned to deal with it. I don't like it, but what the hell am I going to do about that? The interesting thing about raising a kid with disabilities is that there are so many little things that you don't anticipate about their upbringing. Examples:
1. If Mia throws up, we have to take her immediately to the emergency room. A bit severe, say you? Well, maybe, but the reason we have to do that is because of her shunt. She had a shunt in her head that drains the fluid around her brain into her abdomen. If this shunt gets screwed up, it may cause her to vomit. Therefore, we can never be sure and have to get her to the hospital lickety-split. Now, she has only vomited once since she got out of the hospital, so it's not like it's a common occurrence, but on that occasion, we took her to the hospital. It turned out it was just a childhood bug, but still - it's something we always have to be careful about. It's just something you never consider when you have an "abled" child - when Norah was puking, we just rode it out (and it turned out in that instance it was totally my fault).
2. Going along with the lack of communication and the sickness, Mia can't really tell us when she feels bad or what feels bad. It's frustrating. All she can do is cry. Now, not many three-year-olds can diagnose their illnesses, but Mia doesn't even say "Ow" and point to, let's say, her stomach. This makes treating her a hit-and-miss proposition. She's been cranky for a few days, and we're not sure if she's sick (she has lots of snot, but no other symptoms) or if she's just being a three-year-old.
3. Interaction with other kids is kind of strange. A boy at her school adores her (well, they all do, but he really adores her) and he's always running over to her in the morning and saying hi and petting her head and being a boy. He wants her to give him five, so he holds out his hand near her left arm. When she doesn't respond, he looks very puzzled and tiny bit upset. I'm not sure what to tell him, so his grandfather (who doesn't know what happened to Mia, but can figure some things out) and I subtly move him to her right side, and she happily slaps his hand. Just a small thing, really, but it points out what she is going to deal with throughout her life.
4. We have to be careful that she doesn't get dehydrated. It's not as big a deal now that the weather is better, but it's still a concern. She can't drink from a cup because full cups are too heavy for her to lift with one hand, even now when she's older. So she drinks juice from a straw, which she digs, and she still gets a bottle at night with milk in it, because drinking milk from a straw is a dicey situation. As "normal" kids get older, I imagine this becomes less of a concern - give them a sippy cup and they go to town. With Mia, we have to watch out for her.
These are just some small things that bring home how different she is and how much she's going to have to overcome. When she's getting therapy and working hard, you tend to think if she learns how to walk (with the gait trainer, admittedly, but at least she'd be able to get around) and how to talk, her problems might be almost gone. But there is so much we take for granted that it's humbling to think about all the things she can do and how much effort it takes.
¹ Or whatever the politically correct term is these days. "Physically challenged," maybe? Well, Mia is both physically and mentally challenged, and that's a mouthful. "Special"? Boy, that sounds stupid. She's disabled. She was able, and "dis" means the antonym of that.
1. If Mia throws up, we have to take her immediately to the emergency room. A bit severe, say you? Well, maybe, but the reason we have to do that is because of her shunt. She had a shunt in her head that drains the fluid around her brain into her abdomen. If this shunt gets screwed up, it may cause her to vomit. Therefore, we can never be sure and have to get her to the hospital lickety-split. Now, she has only vomited once since she got out of the hospital, so it's not like it's a common occurrence, but on that occasion, we took her to the hospital. It turned out it was just a childhood bug, but still - it's something we always have to be careful about. It's just something you never consider when you have an "abled" child - when Norah was puking, we just rode it out (and it turned out in that instance it was totally my fault).
2. Going along with the lack of communication and the sickness, Mia can't really tell us when she feels bad or what feels bad. It's frustrating. All she can do is cry. Now, not many three-year-olds can diagnose their illnesses, but Mia doesn't even say "Ow" and point to, let's say, her stomach. This makes treating her a hit-and-miss proposition. She's been cranky for a few days, and we're not sure if she's sick (she has lots of snot, but no other symptoms) or if she's just being a three-year-old.
3. Interaction with other kids is kind of strange. A boy at her school adores her (well, they all do, but he really adores her) and he's always running over to her in the morning and saying hi and petting her head and being a boy. He wants her to give him five, so he holds out his hand near her left arm. When she doesn't respond, he looks very puzzled and tiny bit upset. I'm not sure what to tell him, so his grandfather (who doesn't know what happened to Mia, but can figure some things out) and I subtly move him to her right side, and she happily slaps his hand. Just a small thing, really, but it points out what she is going to deal with throughout her life.
4. We have to be careful that she doesn't get dehydrated. It's not as big a deal now that the weather is better, but it's still a concern. She can't drink from a cup because full cups are too heavy for her to lift with one hand, even now when she's older. So she drinks juice from a straw, which she digs, and she still gets a bottle at night with milk in it, because drinking milk from a straw is a dicey situation. As "normal" kids get older, I imagine this becomes less of a concern - give them a sippy cup and they go to town. With Mia, we have to watch out for her.
These are just some small things that bring home how different she is and how much she's going to have to overcome. When she's getting therapy and working hard, you tend to think if she learns how to walk (with the gait trainer, admittedly, but at least she'd be able to get around) and how to talk, her problems might be almost gone. But there is so much we take for granted that it's humbling to think about all the things she can do and how much effort it takes.
¹ Or whatever the politically correct term is these days. "Physically challenged," maybe? Well, Mia is both physically and mentally challenged, and that's a mouthful. "Special"? Boy, that sounds stupid. She's disabled. She was able, and "dis" means the antonym of that.
posted by Greg at
3:54 PM
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