Having a kid with multiple chronic health conditions has given me a whole new outlook on prioritizing. And I don’t mean the more obvious “putting your children’s needs before your own” kind of priority, I’m talking about the minuscule tasks and goals that need to be prioritized each and every day.
I started really diving into my definition of “priority" after my son’s first dental appointment. We were lucky to find a dentist whose specialty is kids with special needs. While checking out his teeth — there were maybe four at the time — she noticed some white spots and other barely noticeable “issues” that tend to be associated with children who spent time on a ventilator. (People are always noticing my son’s mismatched front teeth, but I don’t want to be the Debby Downer who says, “Oh, it’s from being on the vent when he was born.” Womp, womp.)
Then, she proceeded to instruct me on brushing techniques for toddlers, you know, how much toothpaste to use, and what kind of toothbrush to use. She also asked if he ate by mouth, and I realized, oh, yeah, we brush our teeth because of food residue - does my kid really have any of that since he doesn’t really eat by mouth? She said it was still important to brush everyday, and that doing it after his last oral feed would be best. Then she said something very important, in my opinion. She said, and I’m paraphrasing here, “I understand that there are bigger priorities with my kiddos with special needs, I would never judge you if you didn’t get around to brushing everyday, just do the best you can.” Whoa. I thought. She’s right. My kid has sensory issues, and a really tight jaw. From the physical side of things, it’s really hard to get him to open and close his mouth wide enough to get a spoon in, let alone a tooth brush, and he hasn’t been so welcoming to texture near his mouth, let alone on his actual teeth. This whole tooth brushing thing might be harder than I thought.
Day by day, it’s become more and more clear that our priorities are in constant motion depending on our circumstances.
If my son is sick, treating his sickness comes first. Being sick usually means a lot of stuff coming out, and not a lot of nutrition going in. So, we’re back to basics — prioritizing weight gain and tolerating his feeds. Consequently, oral feeds go down on the priority list. His muscles and joints get achy, too, like most people, so getting any stretching or therapy in usually falls down the list a few notches, too. The top priority inevitably becomes supportive care and nutrition.
Some days we have more than one appointment to get to, whether it’s a therapy appointment and an appointment with a specialist, or a fitting for leg braces and daycare, or any combination of appointments you could possibly think of. Having at least three appointments a week is our norm. These are the days when making it to our appointment on time, asking all of my questions to the doctors and therapists, and calming my son’s anxiety come first.
On these busy days, I just hope to get him fed before the hungry toddler comes out and we’re doing a tube feed on the floor of Babies R Us (yes, that actually happened). He can’t tell me when he’s hungry because he’s only just starting to babble, so I have to resort to my good old fashioned watch, and looking for subtle signs of hunger. Unfortunately, on these days, the hours pass by quickly, and I miss the signs that he’s ready to eat. When my medical advocate side takes over, sometimes “mommy” needs a reminder to come out. Sometimes that reminder is a full blown, stage five toddler melt down.
A lot of our valuable time is spent on the phone ordering medication, checking insurance coverage, re-ordering medical supplies, and making appointments. You can’t really procrastinate on re-filling that blood pressure medication, or replacing your supply of feeding tube bags. It also requires a lot of paperwork. Form after form after form needs to be filled out, and even though I split a lot of this work with my husband, there’s always
another form that needs to be completed.
I haven’t even mentioned all the driving to and from daycare, therapy, and doctor’s visits that eats up so much of our precious “free” time. On good days, I try to get in some sensory play, reading, oral feeds, therapy (if he’ll let me), massage to alleviate his tight muscles, nap time, bath time, groceries, cooking, cleaning, laundry, exercising, writing, calling family, and all the normal adult stuff we all have to do. I constantly worry that I’m not the domestic goddess I should be, that I’m not the best wife I can be, that we’re not doing enough playing at home, or that he’s not getting enough therapy.
The reality is, everything doesn’t happen every day. It simply can’t. We just have to prioritize.
I’ve had to be reminded that my son can’t tolerate as much therapy as I’d like him to have, and that both he and I need some downtime to decompress (thank you to our speech pathologist for the reminder). If I can’t get in a work out, or my son doesn’t get a bath every single day, it’s not the end of the world. If we have to order take out every once in a while, fine. If the laundry and dishes pile up, we will get to it. We’ll work on brushing his teeth every night, and it’ll get better as he gains more oral motor skills, and becomes less sensitive to oral stimulation. At the end of the day, I want him to live the happiest and healthiest life he can, surrounded by the family and friends who love him. If that always comes first in the big picture, I truly believe everything else will fall into place.