Learning to Prioritize Self-care as a Special Needs Parent

I went to get my first massage last week. Well, sort of my first.

When Jonah, my son with epidermolysis bullosa (EB), was an infant and we were mostly homebound, a dear friend sent a masseuse to my house. I got a massage on a portable table in my bedroom while the friend cared for Jonah in the living room, right outside my bedroom door. Although it was lovely, it definitely didn’t feel like a Zen getaway, and I was acutely aware of my special needs baby on the other side of the wall.

Fast forward almost 14 years. A few weeks ago, my BFF, Lauren, called me and said, “Hello, hi, yes. I’m going to need your availability next week.” I gave her a few times, and after a quick “Hold, please,” she informed me that she had booked me a massage at a spa just up the street from my work. I was to be there the following Tuesday at 5 p.m. It had been a rough week, and she was determined to lovingly and bossily force me into self-care.

And let me tell you, after my massage, I texted her the following: “OMG. I want to kiss Alejandra [my masseuse]. And I want to kiss you.”

There had been low lighting, soothing music, double blankets, body oils, and a heated massage table. Heated, I say! Where has massage been all my life? Can I book an annual plan? Will my flexible spending account cover it? Can the spa keep me there forever and never make me go home to all the loud people?

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I No Longer View Self-care as a Chore

Easier said than done

Self-care as a special needs mom can be a joke. I can barely get my mind to slow down on all the to-dos long enough to transfer the laundry from washer to dryer. And you expect me to lie still while somebody smooshes on my arms? You want me to prepare nutritious meals? You’re asking me to enjoy exercising? You think I should take up yoga? My initial reaction to that? “Nama-stay right here.”

When you have a child who’s in pain all the time, treating yourself or carving out time for luxury can feel selfish. Why do I deserve hot towels and a body massage when Jonah’s at home going through a painful dressing change with his nurse? Even calling on a friend or grandparent for a date night with my husband is guilt-inducing. These people help care for your kids while you’re at work, and now you think you get to be extra and go on a date? The nerve.

Patrice and her husband, Matt, take a much-needed walk outside near their home. (Courtesy of Patrice Williams)

Even mentally preparing for the massage was tough. And then I was running late and couldn’t find the spa. I called Lauren in a tizzy. She gave me directions, and then answered my final question (of many).

“Are they going to push on my bladder? Because if they do, I’ll pee my pants. I’m not even kidding.”

“You are not late. It’s going to be fine. No, they’re not going to push on your bladder.”

You guys. I am 41 years old. Why am I so awkward?

Building myself back up

All I’m really saying is that I’m a work in progress. I’m working hard to shift my mentality about self-care, to realize I deserve to have my cup filled. I’m better for my family when I’m not utterly depleted. Caring for one child with EB and another with severe attention-deficit/hyperactivity disorder can be exhausting.

Of course they’re worth it, and I’d lay down my life for either of them. But until the moment comes I’m actually asked to do that, I’m learning that it’s OK to work on building myself back up. For me, this looks like setting healthy boundaries in relationships, taking outdoor walks, reading books, doing old lady crossword puzzles (special shoutout to the AARP version with large print!), eating (mostly) healthy foods, and, yes, I think now a monthly massage.

Patrice enjoys completing a crossword puzzle at home. (Photo by Patrice Williams)

Because you can’t hold the world on your shoulders if you don’t build the muscles to lift it. You have to be full and strong and build fortitude to do the hard work of being a special needs parent. Even when you feel guilty or undeserving or like you’re calling on your people yet again, you have to do it. It’s the only way to survive long term. And it’s the only way to be the spouse and parent that your people deserve — the only way to be the person you deserve to be.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.