One of the things I wish people could see is what it's really like to live with and raise a child with complex medical issues, especially when that's combined with a disability. J. has to get treatments every week to help provide her with an immune system. "Treatment" seems a fairly innocuous word, but what it really means is four needles -- 2 stuck in her back, 2 on her inner thighs -- and about 3 hours of lying around while blood product is infused. It also means wrestling her in to a nightgown, fighting about where the needles are going to go, and explaining to the teenagers, for the ten thousandth time, that no, I cannot make dinner because right now I am busy.
J. is nearly 10 years old, and in many ways, is just like every other ten year old girl -- a little bit of attitude, some push for independence. But in lots of other ways, she's like an overgrown toddler. She still needs help to get dressed (try putting a leotard and tights on a very large sack of potatoes, and you'll get a general idea), needs help bathing, and can't have unsupervised playdates with new friends, because she can't navigate stairs on her own, needs help in the bathroom, and doesn't always understand social cues. She also has meltdowns much like your average 2 year old. Trying to calm a screaming, sobbing, snotty-nosed 90 lb. girl down in the middle of the mall is pretty much guaranteed to elicit lots of stares, reminding me again just how NOT normal my life really is.
Most moms I know are completely exhausted between the demands of caring for their homes, their children, their spouse/partner, and their jobs. Moms of kids with special needs live with a level of exhaustion that literally defies explanation.
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