Exhaustion: Leveling Up

Let’s talk about exhaustion, shall we?

And not regular exhaustion, but Medical Mama Exhaustion.

This isn’t to bash anyone else or to downplay other people’s experiences. I’m writing about my experiences. You’re more than welcome to write about yours.

special needs mom

See, I’ve done the regular exhaustion. My first daughter wasn’t fond of sleeping. I remember that blur.

But I had NO idea how exhausted I could actually get until I became a special needs mom.

When our daughter first came home at two months old, she thought nights went from 3pm to 3am. Yeah. Fun. And I couldn’t do the old ‘sleep when the baby sleeps’ thing because she still needed tube feedings even if she were sleeping. And she still needed trach suctioning. And she still would kick her legs and set off her alarms.

And I still tried to do ALL THE THINGS during the day! Look at me! I can handle EVERYTHING!

Yeaaaaaah, I stopped waking up to her alarms within a month or two.

And fortunately they were false alarms and fortunately my husband heard them.

But that’s a dangerous level of exhaustion when you have a medically fragile infant.

Eventually we cut out the tube feedings we were doing at night and slowly shifted her towards a more normal night schedule.

I began to accept I couldn’t do ALL THE THINGS and still be an effective night nurse, but for the next…oh…three years? Yeah, it would have been about 3 ½ years, I would get up with her anywhere from 10-15 times a night.

special needs parenting

And it wasn’t the type of waking that I had done with our older daughter, that groggy assessment of what type of crying it was and grabbing her to nurse back to sleep.

No, this was the “I don’t know if that alarm is real or false” or “I need to wake up enough to get a teeny tiny suction catheter into a slightly less teeny tiny trach” type of waking up.

At 3 ½ years old, Evie’s pulmonologist opted to put her on CPAP via a ventilator (you can’t do CPAP on a trach with just a regular CPAP machine) to help deal with her aspirating (blowing air upward from her trach would keep her saliva and such out of her lungs).

At first, it was terrible as it stirred up all the junk in her lungs from years of aspirating. She coughed so much and I was up even more for several weeks.

But then, the clouds parted and the sun started shining and birds were singing. There was probably even a rainbow or two, maybe some ethereal singing, and I’m not even kidding, I contemplated covering her vent in heart stickers and writing it a few love sonnets.

*brushes aside a tear*

I love that vent.

Now, unfortunately that was paired with all sorts of other medical issues going on, so I wasn’t really catching up on a sleep just yet, but Evie’s lungs got so much healthier and eventually we got to maybe just a 2-3 wake ups each night.

It was heaven.

We had some setbacks, like when she started breathing more out of her mouth and nose (yay!) but that meant her vent couldn’t read her breathing and alarmed about SEVENTY times a night (boo!!!).

We got it resolved after several weeks with the help of her home care nurse (I was so exhausted, I couldn’t even register the problem or figure out what to do about it).

I started sleeping, really sleeping, and it was…well, it was actually terrible.

See, you get used to chronic exhaustion. You don’t. But you do. You get used to the tightness in your chest and the fog in your head and you don’t have a choice but to just get on with life.

But then you start sleeping.

And your body goes “ohmyWORD, I’m soooooo tired. I’m so sleeeeeeeepy. I don’t think you should keep your eyes open today.” It was miserable. I have never felt as sleepy as I did after I started sleeping again.

It was a solid two weeks of that, but then things improved dramatically.

I wasn’t pumping myself up on a caffeine all morning trying to get moving and then dealing with the massive anxiety that would hit early afternoon. My body didn’t ache like it had for the past how many years.

Since then, my sleep has continued to improve, though now I’ve noticed that if we have a bad night or several (or a full week. Thanks to whoever passed this cold onto us), I don’t bounce back easily. I don’t have any reserves built up yet and even one bad night can take me a solid week to recover from (I’m hoping the fog clears by Christmas from this little stint).

All this to say:

Medical moms are EXHAUSTED. We’re massively exhausted. Because it’s not just the sleeplessness.

It’s the anxiety.
It’s the worrying.
It’s the role of caretaker.
It’s the doctor appointments.
It’s the research.
It’s the hospital stays.
It’s the PTSD.
It’s the nightmares.
It’s the grieving.
It’s supporting friends as they grieve.
It’s trying to be a mom to other kids.
It’s the endless pressure to never ever ever mess up even a tiny little bit.

Many of us have only had a handful of restful nights in several YEARS.

Most of us are in pure survival mode.

So guess what?

Our houses might not be the cleanest.

Our conversation skills are probably pretty terrible.

That filter that keeps you from saying stuff that maybe you shouldn’t say? It doesn’t work all that well for us anymore.

We’re probably swinging between a cold robot who has to suck it up and do what needs to be done to keep our kid alive or an emotional trainwreck who hasn’t yet processed years and years of trauma.

We’re unlikely to be a good option if you’re seeking sympathy for typical parenting woes. It’s not that those aren’t legitimate concerns or struggles. It’s that we struggle to not be jealous of those problems.

We probably aren’t going to have the energy to deal with too much nonsense.

(Oh, the mom you know has nursing at night so she has no excuse? Yeah, because those nurses totally show up every night and they never just call in sick at the last minute or maybe just don’t show up at all. And those moms totally never have to step in and stay awake all night at the drop of a hat. And that rest when the nurse is there is so completely restful as they worry about their child and worry the nurse is staying awake and worry about someone being in their house.)

What it all comes down to, though, is this:

We’re exhausted.

Really exhausted.

And we’re struggling.

And we need you to be gracious and patient with us.

And if you can’t do that, that’s okay, too.

As long as you show yourself to the door.

Because we’re too tired to point you in the right direction.


Is it bedtime yet?


Coffee, please.

special needs mom


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