Periodic Paralysis

It’s 6. I responded to 50+ alarms last night. I was teetering on the edge of the bed I share with my child- trying to sleep between blaring lights and loud beeps. A normal night before a normal day. A friend recently complained about “work life balance.” Annoyed with being called at night occasionally-with how disruptive that was, how little praise was given. In my sleep-deprived state, I googled to see what the fuss was about. Forbes had some tips and I read them as a person whose “work” is indistinguishable from their “life.” “Let go of perfectionism.” No one is perfect, but some of us don’t have the option of lowering our standards. There’s never been a day when I thought I did enough- so I guess I’m doing this backwards. As a mom, I try everyday to be better. “Unplug.” Enjoying the moment is something everyone should do, especially parents who understand the fleeting nature of time. But, we track meds, and symptoms around the clock. “Exercise and Meditate.” Does crying in the shower count? (With the door open of course, because you are *still* “oncall.”) Workouts come in the form of running late to an appointment and getting to do all the loading and unloading at warp speed. “Limit time wasting activities and people.” When you’re a caregiver, often your priorities ARE someone else’s. That’s kind of the point. “Change the structure of your life.” This tip revolved around getting out of a rut, and focusing on the tasks you value most. Ruts are critical in a lot of households- without them, mayhem can take hold. I focus on what HAS to be done and that leaves dishes and an immaculate house sitting on the back burner. Delegating was mentioned, and I nailed this one. I got a roomba on sale. And now I delegate sweeping. “Start small. Build from there.” This is the only tip on the list that really resonated with me. The ONLY way that I can imagine having changes occur, is slowly and in bits and pieces. In some of the groups we celebrate inchstones, instead of milestones. Small, maybe, but mighty progress.
So how DO you find balance when your work and your life are one in the same? I still don’t know. I love my job, as a mother. I love my job as a caregiver, although I would give anything to go back in time and take at least some of the struggle from my child. Not because I want to “work” less, but because I want him to suffer less. While the husbands and friends out there are complaining about THEIR work life balance, I do wish some would look around and see the moms (all the moms, but especially those with medically complex kids, kids with disabilities, neurodivergent kids, etc.) that are not only oncall 24/7 usually in unpaid positions (hey! Check out the waivers in your state for paid parent caregiver options), but also don’t have the option of meditating in the park. For me, I think I’ll throw this imaginary scale out of the window and just keep on keeping on. #SpecialNeedsParenting #MedicallyComplexChild #PeriodicParalysis #SleepApnea #Disability #Rare #Laryngomalacia #Pharyngomalacia #ChronicLungDisease #Dystonia

I have a list of 7 songs that soothe my soul and feel like a giant hug.

What are yours?
#Spoonie #CPTSD #RareDisease #Disability #PsoriaticArthritis #PeriodicParalysis #AntiphospholipidSyndrome #LivingWithPOTS #Anxiety

Thanks to the Valentine’s holiday, our school’s parking lot was much busier than usual for pick-up. The handicap spaces were taken, so I parked our swagger wagon with the other cars next to curb, making sure I left enough space to be able to load up the adaptive stroller, trilogy, walker, etc.
“Wow! It’s busy! Even the handicap spots are full today.” (Me, making awkward small talk.. as moms do.)
“That’s so cool that you GET handicap parking *because* of him.” (Other mom... probably also feeling awkward.)
While my brain registered the shock followed by passionate and witty responses that never made it to my mouth- I heard my voice explaining that it’s not for me. “It’s FOR [not because of] my son, who can’t walk far.. and sometimes can’t walk at all. It’s because he has so much equipment. He uses oxygen and needs a machine to breathe if he sleeps. It’s because his doctor thought it was help...” the explanations went on. I know I didn’t have to justify the parking situation, but I felt compelled to. For some reason I also felt compelled to add that we park far away when there’s enough space if we are using the stroller. Was I angry that this mom thought having a child with disabilities came with perks? Or maybe I felt guilty- because I don’t have a disability, and I’m the driver? I don’t know... but I do know that being able to park closer is *for* my child. It’s not a perk. I’ve never felt personally “lucky” using it, or lugging around a van full of equipment to go anywhere. I’d rather park in the back and have my children hold my hands as we skip on the concrete towards the far away store, but that’s not how we roll... and that’s okay. I’m grateful for my children and I love them more than anything. I’m lucky to have them and be their mother. *They* are perks. Parking isn’t. Having multiple therapies a week isn’t. Spending hours on the phone, emailing, scheduling, etc. isn’t. Hospital visits aren’t. Medications aren’t. Non-invasive ventilation is certainly not a perk. No sleep=not a perk. Equipment all over the house isn’t a perk either. Watching my child cry because his legs don’t work... you guessed it. Not a perk. We “get” a lot of extra stuff FOR our child... and most of it isn’t anything to be jealous of. 100% be jealous of my amazing beautiful children- I don’t blame you. I’m a lucky mom and blessed human being. But please- don’t assume I’m using my child’s disability to avoid walking 30 extra feet, or enjoying the parking perks. Thanks. #specialneedsmom #HandicappedParking #RareDisease #Hypotonia #PeriodicParalysis #AirwayDisorder #MobilityAids