There’s a tiredness that is understood to come with motherhood. It’s a mixture of physical and emotional exhaustion that evolves over 18 years.  It’s physical, sleepless nights that turn to worry-filled ones in time. It’s nursing infants, schlepping strollers, chasing toddlers, carpooling to little league, feeding the neighborhood after the game, trying to remember algebra to help your daughter, and looking at a sleeping teenager whose feet hang off the couch and wondering when your boy became as tall as you.  It’s hard but rewarding. It has no roadmap but clear peaks and valleys. It’s well defined, understood by most, and sustainable.    

Then, there’s a tiredness experienced by special needs parents. It’s invisible.  

It’s the universal experience of motherhood with added responsibilities—like measuring medicines that are the difference between life and death, getting your child to and from daily therapies, schlepping their adaptive equipment, and having to pack what feels like a suitcase of medical supplies just to go to the grocery store.

It is the kind of tired coffee can’t fix. The kind of “tired” you wake up with.

It’s bills that never get opened and voicemails that go unanswered. Not because you don’t care, but because you can’t care.

You can’t add another “to do” or “to pay” to the list.   

So, you leave them be.

It’s friends you never call. Not because you don’t long for their company but because “grabbing coffee” involves more planning than you have energy for.

It’s waking up with your 12-year-old four and five times a night.

It’s not waking up with her because you’re scared if you close your eyes, she won’t wake up.

It’s weeks on end spent inside hospital walls, hoping your other two children don’t resent you for missing their homeruns, touchdowns, and awards assemblies.

It’s hoping your child lives forever while worrying about what happens if her “forever” is longer than yours.

But it’s a tiredness you can’t speak of. Because it runs so deep it’s engrained in you, and because it’s a tiredness too alienating to speak of.

It’s expected that new mamas are physically tired. And seasoned mamas are emotionally worn out. But not special needs parents. We assume their child’s illness gives them superpowers. We ask a new mom how she’s sleeping. We tell a special needs mom we couldn’t do what she does. Not because we don’t care, but because we don’t realize how tired she is.

We don’t realize it because when we look at her, she’s “got it together.”
She’s cheering as her near-teenager takes her first steps.
She’s whipping up gluten-free everything, advocating for inclusion at school, and celebrating victories God only knows how hard she fought for.     

She’s not crying in a corner.

But maybe it’s because she’s too tired to.

Parenting is exhausting. And I don’t share this to say special needs parents do it better. I share it to say they do it for longer and without a roadmap.

And because they do it so well, they make it look easy. But it isn’t.

And a pat on their back, a cup of coffee, or the words “I’m here” might just be the light their path needs.

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To the Special Needs Mom Who Sits Alone

Dear God, I’m Just So Tired

Moms Hardly Sleep But That’s Not Why We’re So Tired

    

Cara Arnold

I’m a mama to 3 whose learning to balance parenthood and chronic illness at the hands of autoimmune encephalitis. Some days I’m a soccer mom, carpooling like a boss; other days I’m a relentless advocate, taking on doctors and insurance companies alike. But, if you’re looking for consistency every day I’m a hot mess. My life is a puzzle that’s still not together. I used to think pieces were missing. But it's all finally fitting together. It’s not what I envisioned, and some days I mourn that; but it’s mine. And knowing how fast that can change I try to appreciate every moment of it.