Thursday, June 13, 2019

Bruised, Bent, but Not Broken

It’s been awhile since I’ve updated here. Life has been stupid busy, and to be honest, blogging hasn’t been a priority.
Which is really stupid, because realistically, writing is the only therapy that works for me.
I’m feeling bruised today. Like there is this point where, as a special needs mom, you have to reach within yourself to find that little bit of strength that was left at the bottom of your soul. You aren’t sure it will be there when you reach, but you find it, and that gets you through one more day, one more hour, one more minute.
I’m to the point in my life where I’m continually surprised that the last little bit is there. I fully expect to reach into that well and scrape the bottom, my fingers grasping, but finding nothing. Maybe I even have, a few times. Those were the times when I sobbed in the shower, hoping the kids didn’t hear me over the sound of the running water. Or when I left the room as soon as the husband got home, because I needed just five minutes of quiet.
It’s times like these that remind me of the necessity of self-care. I know, that seems so stupid to so many special needs parents. I mean, how in the fuck am I gonna find time to care for myself, when I’m so damn wrapped up in taking care of these kids.
And man, I get that. On the deepest, darkest levels of pain and fear and sleep deprivation, I get what you’re saying. There are not enough hours in the day for me to take care of the kids, work, cook, keep house and spend any amount of time to take care of myself.
And sleep? Oh, yeah, that’s a laugh. My therapist notes that special needs parents often have PTSD, and that causes a severe lack of sleep, because we’re afraid something may happen while we’re sleeping. I have sat up countless hours watching Yoda sleep, because Mother caring for her sick girlhe jerked or moaned in his sleep and I was afraid that might be a lead up to a seizure. Sleep in and of itself becomes a form of self-care, simply because it’s something we can grab in short spurts when a partner gets home or a friend offers to sit with the kids. I’ve napped in the truck (with Larry driving) on the way to doctor’s appointments, and in the waiting room while Yoda was having Occupational Therapy.
A few weeks ago, we were at Batgirl’s oncology appointment, and there was a mom and kiddo there in the waiting room, with sleeping bags, pillows, everything they would need to be comfy while they waited. I thought “Oh, man. I get you, mama. Hope you get some good snoozing in.”
But the reality is, special needs parents don’t get enough self-care. Often, it’s because there’s a lack of resources. I feel guilty going to get a manicure when I know I will be getting a bill from Children’s for $550 any day now, from Yoda’s latest inpatient EEG. Date night with the husband is almost impossible, simply because there’s a lack of people willing to take on Yoda’s care. It’s not that he requires much in the way of ongoing care while we’re gone, it’s that, on the off chance that he does have a seizure become status epilepticus, his life is completely in the other person’s hands. There’s not a lot of people willing to take on that level of responsibility. We could hire a nurse, or even a nursing student, but then we go back to that $550 hospital bill, and weigh it against what we would need to pay for a skilled caretaker, and we’re back to the reason I don’t get manicures.
Truthfully, it pisses me off. I know that in an emergency, where one or both of my chronically ill children needed care and neither me nor Larry is unable to provide it, there are three people I could call.
Three who would be willing to drop everything and come down here and care for my kids. And of those, two risk losing their jobs or an entire season’s income to do so. Most likely, they would do it anyway, but it would still have a long term impact that I wouldn’t wish on anyone.
So when I see those memes that talk about how special needs parents must take self-care seriously, I usually just blow them off. Sometimes, I get downright pissy about it though. Yes, it’s important. Yes, we must prioritize it, or we will be scraping the bottom of that well of strength.
But there’s no one else to do what needs to be done, so we can’t. So I will continue to feel bruised until there’s some point where I can get some extra sleep, or lock myself in my room to watch Handmaid’s Tale while I fold the laundry, or something else that can take my mind away from the every day struggles.
In the meantime, recognize that the special needs mom you know may need some extra patience because she hasn’t slept well. Or that the special needs dad had to break plans with you because he’s picking up extra shifts at work to pay that hospital bill. Grant them your patience, and maybe cook dinner for the family one night so they can spend more time together.

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