I’m a mom of a child with a disability, and I’m exhausted. This isn’t the kind of exhaustion that will go away with a nap. This is a tiredness in my bones, a relentless exhaustion, and it comes from not only advocating and caring for my daughter, but interacting with everyone who offers me tips and advice on how to best help her. This is on top of working, holding my marriage together, writing a book, and the other adulting responsibilities that come with my very real life.
I’m open about my exhaustion, not because I want anyone to feel sorry for me (nothing I hate worse than a pity party), but because concealing it is so much work. There’s freedom in speaking your parental truth and I hope by being transparent with my struggles others can feel comfortable doing the same.
The problem is that this honesty, authenticity, and vulnerability comes with a cost. Even though I consider my inner circle to be sanctuary, there are those who choose to respond inappropriately (hello social media).
It’s super disheartening.
I can’t tell you the number of times someone has responded to my exhaustion with an off-handed comment about how I need to practice more self-care. As if getting my nails done, taking a hot bath, getting a facial or massage, or going on a shopping spree will magically erase the demands that come with being a parent of a child with disability. Yes, self care is important but it’s more like “self care so I can keep going at the harried pace I’m routinely running at”–not self care to make the situation better.
I’m also had people say “just take a vacation”. You do know vacations cost a ton of money right? You realize her medical costs are astronomical? And require time away from her right? If I’m not caring for her, who will be? We don’t have endless trained babysitters on tap to help us out. I’m also pretty sure the person who flippantly tells me to just chill out with a mojito, poolside, in a tropical location a few thousand miles from home won’t be stepping up to help either.
Which leads me to the fact that finding childcare for a kiddo with special needs or a disability is extremely difficult. Disability parents have to find someone they can trust, someone who will follow their carefully laid out rules and expectations, and who also has the creativity and knowledge to adapt appropriately to their child when needed. Honestly, we are winging it for most of the time, so it’s next-to-impossible to find someone to come in and do the same.
Parents of kids with disabilities aren’t only working every single moment of every single day for our children, but we also have to fight stereotypes and combat judgements. We’ve been asked so many questions along the lines of these. Why don’t you try essential oils, supplements, chiropractic care, prescription medications, therapy, a special diet? Perhaps you need to put out more positive vibes into the universe or pray harder, asking God to heal your child?
Trust me, if we could just whisper a prayer and my child would be healed, I would do it in a heartbeat. But that’s not how disability works. And frankly, defending our parenting to all the know-it-alls out there (on the internet especially) is exhausting us. We don’t need pity or criticism. We just need support. If you can’t offer that, please keep your comments to yourself.
I absolutely don’t reply to every bit of unsolicited advice or ignorant (and unwanted) feedback. I try to protect our peace at all costs (hello boundaries) However, I’d be a liar if I didn’t tell you that these little digs at my ability to parent my daughter begin to pile up, to the point of toppling over like a pile of Lincoln Logs. I have bad days where I wonder if maybe the critics are right. Maybe I’m not doing a good job. Maybe I’m not a good enough mama. My daughter does deserve the best, not an exhausted, burned-out mama who cries in the shower and questions if she’s making the right choices.
Related: I Started Scheduling Solo Time–Here’s How it Saved My Mental Health
I spend a lot of time advocating for my child, whether that’s my presence, in school meetings, or in social situations. While other moms can pair off and chat about baseball practice and cheer camp, I’m keeping an eye on my kid while trying not to helicopter parent her to death. It’s a fine line. Letting her make some mistakes, fall down (literally and figuratively) and then being there to pick up the pieces.
The reality is, I’m always on. Even after Callie is tucked into bed and is (finally) sound asleep, I am paying medical bills, reading books and articles about how to best meet her needs, researching new grants, making updates to her 504 plan and learning about new therapies and procedures that could help her. I’m doing research on whatever our newest challenge is (this week it’s a sore spot on the bottom of her residual limb), disability laws, and emerging findings on new innovative therapies.
Like all mamas, I just want the very best for Callie. I’ve been blessed with the gift of being her mama, and I’m not going to ever, ever give up.
But if I’m honest, I’m tired.
