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What Bedtime Looks Like for a Medically Complex Child

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Bedtime is never just telling my son, “Good night.” It is administering multiple medications to aid in sleep and to help with the pain.

It is starting overnight g-tube feeds to keep hypoglycemia at bay. It is giving tickles down my son’s arms and legs, scratches on his head that he can’t reach because of his limitations and disabilities, and then laughing at something outrageous or funny that he said unexpectedly.

It is ensuring there is no shame to be had when my 13-year-old son asks for help with his toileting needs. Once cleaned, it is storytime, and we will read the same Batman comic book as the prior evening because my son is autistic, too, and likes routine.

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