Dear Disabled Mom,
It’s hard to take care of your littles when you can hardly take care of yourself.
It’s hard when you lose stamina quickly because your energy is limited.
It’s hard not to look around at the other moms and feel completely inadequate.
Did you know that there are as many as 61 million people in the U.S. with a disability? I think it’s fair to say many of those people are parents as well.
We’re taught to just put a smile on our face and pretend like we’re not in daily exhausting pain.
What’s important to note is these moms may not be seen. Maybe it’s a mental illness, multiple sclerosis, rheumatoid arthritis, or a thousand other things. All disabilities have challenges, but an invisible illness lacks the consideration of society. And we’re taught to just put a smile on our face and pretend like we’re not in daily exhausting pain.
These have been my own struggles over the last seven months as I suddenly found myself disabled. On June 29, 2021, my life changed forever. I have suffered from a spinal CSF (cerebrospinal fluid) leak for 7 months that leaves me bedridden, unable to lift my head upright for more than 30-60 minutes at a time depending on the day. This happens because I have a tiny hole at the base of my spine that is leaking out fluid. That cerebrospinal fluid is needed to keep your brain afloat within your skull.
When I’m laying down, I feel okay. The second I elevate my head in any way (sitting, standing, multiple pillows), it feels like my brain is being sucked down into my neck with a straw thanks to gravity.
With a seven-month-old and a two-year-old at the time, I had to leave my job as a pharmacist. I had to rent out my house and move in with my in-laws for childcare. My husband is completely burned out, with his PTO being used up to take me to out of state medical appointments instead of that much needed vacation.
First, isolating with COVID and now this, I worry about my children.
No more vacations. No more weekend outings. Hell, I can’t even take my kids on a walk around the neighborhood. There have been rock-bottom points where I wonder if my family would just be better off without me.
But then I worked through the stages of grief. I’ve slowly adjusted to not only accept, but even enjoy some aspects of my new life. For one thing, I’m home with my children every day. I watched my son’s first steps which I missed with my daughter while I was at work. Patience was a skill I once struggled with, but now dominate with flying colors. I’m now finding a new line of work, where I have a new purpose and can contribute to my family.
I allow myself a once a month cry session in the shower or in bed with a glass of wine watching a sappy movie. I always feel better after.
So whatever disability you’re living with, here are some tips that have seen me through as a disabled mom:
1. Take care of yourself first.
And not like a “make time for a spa day” (which really just adds to things I need to do). Make sure you take breaks when you need to throughout the day and know when to say no to obligations. You’ll be a happier mother when your needs are met.
2. Embrace the little joys that life brings us.
Maybe it’s a silly noise your baby makes, your toddler fumbling through words, or that time with your spouse when the kids are sleeping.
3. Find the silver lining in your situation.
Think of all the things you are giving your child: compassion, empathy, more quality family time. It’s best to focus on the positives, then to dwell on things we cannot control.
4. Have a “cry day” once in a while.
It’s important to acknowledge your feelings and if this is a new disability, to grieve your old self. I allow myself a once a month cry session in the shower or in bed with a glass of wine watching a sappy movie. I always feel better after.
5. Seek out support.
Whatever type of support you may need. Family, friends, church to help with your daily chores. Seek medical help for the days that really get you down or if you’re having any feelings of depression.
So, to the disabled mothers out there, it’s hard.
It’s hard to adjust your plans around an illness, but plan on making wonderful memories with your family.
It’s hard to not be able to control your health, but control the way you think about it.
But guess what disabled mama? You’re doing a great job.