I was scrolling through Facebook and came across the question – What is your favorite thing to do on a day off? It stopped me in my tracks.
Day off? What’s that? I am a special needs Mom. I do not work outside the home. And my son goes to school. But because he has had seizures in the past, I am constantly on call. 24/7/365. So even if I want to nap during the day, I have to leave the ringer on in case the school calls.
When I try to think of what I do, I can’t really tell you. I often feel like I DON’T DO ANYTHING. I am just ever present. I am here for interaction. Diaper changes. Food dispensing. Love and affection (which I affectionately love, don’t get me wrong). Teachable moments. Laundry, dishes, cleaning (none of which I excel at, have organized, mastered or particularly care about, if we are being honest).
If I stay at home and don’t work outside the house, financially we receive affordable health care, diapers provided by Medicaid and other benefits. Our financial situation is close to the bone. But if I work outside the home, we lose the subsidies and extra help. All of our expenses then go through the roof. So, in order to make it worth my while to work outside the home, I have to earn an income that would be difficult to find, certainly unavailable in my chosen field of education. Same goes for my husband, who is battling a long term illness.
So, we don’t. My husband and I are both stay at home parents.
Right around the time that my son was diagnosed, we cared for my mother who had Alzheimer’s disease. I went to work, my husband stayed home to give care. I used to go to work to relax, if you can believe it, as I taught PRE-K. That was the amount of stress and pressure that was at home.
Nowadays, with my Mom gone and my son in school during the day, things are less pressured but the pressure is always still there. I am ALWAYS ON CALL. Even if nothing happens. Which means that I never completely relax. EVER.
I just stopped writing for a good twenty five minutes to change a poopy diaper, dodge an epic meltdown because I cut off the milk supply (it’s almost bedtime) and finally settled back in my chair while my son works off his anger at being told no in the bedroom. OK, I guess THIS is what I do.
But getting back to the favorite things to do on a day off, I remember back before I was a special needs Mom and I HAD days off. I liked to sleep in, read, take walks, go to garage sales, meet friends for coffee and other simple things. I have never been one to need copious amounts of adventures, although I certainly had my fair share. Simple appeals. Especially now.
Thinking about this makes me realize that for the longest time I didn’t do any of those things. I just relentlessly focused on my son, his needs, his therapies, his choking, his lack of progress and what I needed to do to FIX things. Eventually, our new normal settled in. And I missed myself.
But I realized that having a day off wasn’t going to happen again for a long time, if ever. So there had to be a way to still enjoy life in our new normal. So I created “pockets off.” That is, pockets of time to be off.
I actually just named it now. I didn’t realize that I was doing it. But now I see that I did.
During the school day, when my son is gone, my husband and I try to have date time. We may go out for breakfast or go to the gym together. If we nap together, the phone has to stay on, which means any phone call we receive will interrupt us but if we take turns napping, the napper can give the one staying awake the phone. Then the one sleeping will only have to be disturbed in a true emergency.
Bedtime is reading time. When everyone finally gets settled in (no small feat!), I read. I also try to read during the day when I can.
If you aren’t getting a day off any time soon, is it possible that you could find a pocket of time for yourself? Even if it is a short fifteen minutes? What did you used to do on a whole day off that you could modify in a shorter time span for yourself right now?
Instead of meeting for coffee, maybe you could Facetime a friend, coffee in hand. Instead of going out to a movie, Netflix means that you can pause as many times as you need to or even come back to it later. Microwave popcorn optional. If you work outside the home and parent a special needs child, maybe you could arrange to leave fifteen minutes earlier at the end of the work day and just spend the time on a park bench, until it is time to pick up your child. The tendency will be to cram in yet one more thing in that fifteen minutes but try really hard not to.
Even if you have absolutely no time and must multitask, you could listen to books on tape or podcasts during your commute. It is so hard to think about yourself when you are always focused on the most important person in the world, your child, but caring for yourself makes you a better parent. So, in the end, your child benefits from this, too.
These pockets of you time are important. They refresh you. They remind you that although you are a special needs caregiver, you are still you.
What do you enjoy doing during your pocket of time off?
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