I have a special needs child who hasn’t slept through the night for more than a night or two at a stretch in 5 1/2 years or 2023 days…not that I’m keeping track. Which also means that I haven’t had a really good sleep in just as long. Amelia has been a mover and a shaker since very early on…tics and twitches that made sense to no one. No doctor in the land could decide what ailed that poor child, and it wasn’t for a lack of effort on my part.
I spent the majority of the 25 months she nursed, breastfeeding a shaking child. I had a small human attached to me, many times a day, whose eyes would bounce wildly and whose body would shake every single time she nursed. It was incredibly humbling and so very painful. I shed a lot of tears back then. It’s so hard to work through the stages of grief when the struggle is right in front of you.
Caregiver fatigue is so much more than just sleepless nights with no end. It’s the uncertainty of it all. It’s the constant diligence. It’s giving your all and knowing that it’ll never be enough. It’s struggling to accept that some things just aren’t able to be changed. With a child like our Amelia, who is autistic and only semi-verbal on top of her other medical concerns, it’s not ever having a moment’s peace. The second she’s out of our sight, she’s into something she shouldn’t be. She’s a master at hunting down and consuming things she shouldn’t and destroying entire rooms, Tasmanian Devil style. And she is FAST!
So, how do you deal with an extraordinary responsibility like an Amelia? Well, for the longest time, I couldn’t. I was stuck in a vicious, churning cycle of grief. My hair was falling out in clumps, my skin was breaking out like a teenager, and I was having anxiety attacks that I was fighting a losing battle to keep at bay. I will always struggle with the stress of it all to some extent, but over the past half decade, I’ve learned to cope.
My biggest piece of advice is to find a support group. I cannot stress the importance of this enough. It wasn’t until we received Amelia’s diagnosis (2q23.1 Microdeletion Syndrome or MAND, if you’re curious), which is incredibly rare with just 75 cases on the books when she was diagnosed, that I’d even thought to find a support group. Even then, I wasn’t out looking for one. I just happened to stumble on their facebook page, as it was one of just a very small handful of places to gather information about 2q23. At that point, I had spent two full years wallowing through that horrible emotional trench A-L-O-N-E. It nearly killed me. But it didn’t have to be that way. Our support circle has been a lifeline. To be frank, I don’t know how I ever survived without them. So, if you haven’t yet connected with others fighting a similar battle, make it a priority. If you’re not sure where to look, message me. I’d be happy to help.
Take a good look at your care team. Are you spending most of your time bouncing from hospital to hospital and to and from a plethora of therapy sessions? Do you really NEED them all? I know some really do, and this isn’t somewhere you can negotiate. But I see so many (and we were among them) that have a ton of specialists and enough therapists to make your head spin. Some are necessary. There are some though that aren’t and can be put on hold or cancelled all together. In Amelia’s case, we ended up nixing our rounds with neurodelopment as they were simply repeating tests we’d already done a couple of times over to qualify for therapy and weren’t really inputting anything new. We spread all her other appointments out as long as we reasonably can. Less time in the hospital means less chances of picking up a stray illness. Amelia has a wonky immune system so the further we can stay from illness, the better.
There is a time and place for therapy. If it’s helping, go for it. If you’re feeling like you’ve hit a wall with progress or it’s just not the right fit, it’s ok to walk away and do your own thing. If you find you still need help further down the road, you can always go back. Life is therapy so you wouldn’t be doing nothing. You’d just be doing it differently and there’s nothing wrong with that. In Amelia’s case, she needs a speech therapist who understands her and a physical therapist willing to do specific conditioning and we just weren’t getting that. So, we took a break from it all and she has really done well. For us, it was the right decision.
Take some time just for you. This is something I fail miserably at but when I am able to get out alone, I feel like a different human when I come home. If you can’t go out, try to steal some time just for you. Sit in a quiet room and read a book or watch a movie. Tinker with a jigsaw puzzle. Hide in the closet and enjoy a piece of the “good” chocolate. Take a long, hot bath with Epson salts. Drink a beer (or two). Do whatever you need to do to keep yourself from tumbling off into the deep end. It’s hard enough taking care of someone else when you’re feeling well and nearly impossible when you’re not. So, be sure to take time for you regularly.
So, find that support circle. Surround yourself with people who really “get it” and communicate with them regularly. Make sure your care team is adequate and not over-kill. And take time to take care of yourself. As difficult as that may be, it’s absolutely necessary. You’ll be in better spirits and you’ll be better able to continue caring for others.
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