I am assuming for a moment that the majority of my readers are primary caretakers of at least one severely disabled child. I know there are others … but this post is mostly for you.
What happens if suddenly you disappear? You’re hospitalized, called to the bed side of a beloved out of town parent, sent to some bizarre war in a far away corner of the world? What if, god forbid, you suddenly and unexpectedly die?
My point is, do others know everything necessary for your child? Does your spouse know how to make all the meds, when to give them, how to give them? Can the other children spot a seizure coming on? Does someone know what the ducky lips look means? Who knows how to hold her or him in that special way that helps mitigate a seizure? What position s/he falls asleep in the best? Can your partner instantly handle all the children, normal and not so, by his or her self? Is there a babysitter or nanny that can? How much is written down? Where are the diaper wipe refill thingys and how do they go in that box? What do some of her sounds mean or that look in her eyes?
Eight days ago I woke up and was walking into Pearlsky’s room to wake her up. Somewhere between my bed and hers, I ruptured L4-5, a lower spine disc. I was doing absolutely nothing other than walking from one room to another. By some miracle, I got her dressed and in her chair, I text’d her school aide who was able to come and help with meds and the rest, and she went to school. I have been bedridden since, lots of Percocets and ice. Yesterday’s MRI was not good. “Oh, that’s the most painful type of rupture” from the chief of a very well renown spine center. Thanks, doc.
I have had minimal interaction with Pearlsky, and the Vicoin isn’t doing that much either. I miss feeding her, being with her, all of our interactions. Friends are trying to help, but no one knows her like I do. I find myself shouting from my bedroom “that sound means she is probably thirsty.” Thank god for nanny cams, too. Her nanny has been great working extra hours, others trying to learn to feed her or use the lifts on the fly (so to speak). Wonderful calls from friends around town and those who love us from around the country are super and helpful, but alas, it is those “on the ground” that need to know what to do.
You know me, I am NOT looking for sympathy, etc. I just want to know, how are you prepared?
I am told that after a couple of weeks I will be fully healed. What’s a bit of intense pain between friends?
(special thanks to Lauren, Brenda, Kelly, Mary, Miriam, Anna, Yelena, Sandi, Kate and Jim, few of who even know this blog exists! and others whom I will remember when the drugs wear off.)