by This weekend was AJs last outing in public. After a lot of discussion, we had previously made the decision to pull him out of school to do homebound schooling until spring.
A year ago tomorrow, one of AJs heart diagnosis buddies went into the hospital with rhino virus (aka a common cold). A year ago today was the last time that little friend saw the world outside of the hospital walls. After 26 days of being inpatient, her body simply couldn’t take any more.
For kids with HLHS, their lungs do a good portion of the work in supporting circulation of blood around the body. This works amazingly well, when their lungs are healthy. But when their lungs aren’t healthy, things can easily go downhill really fast.
This momma and I are still friends. She’s not on Facebook – it’s simply too hard for her. Facebook was where she went to follow other kids journeys and get advice and support. It’s a great place to help you feel not alone when you’re a medical parent, but she’s not ready yet to see all of the posts, or to take the time to leave groups and stop following pages, nor does she feel ready to join the pages for moms of angels. I often have a hard time understanding people who don’t use Facebook these days, but I can completely understand why she doesn’t.
We still keep in touch through other mediums. Mostly because I’m a self proclaimed jerk who continues to bother her (she has admitted she likes it, so don’t jump on my back!).
Today I checked in with her, knowing it was going to be a hard couple of days for her. She immediately asked me if I was psychic, and we ended up on a long FaceTime call chatting about regret and guilt.
She still regrets and has a lot of guilt around not pulling her daughter out of school the first instant she heard that there were sniffles going around. I told her that I was actually regretting and feeling guilty for pulling AJ from school when he has been making so much progress.
Same question. Different answers. Different regrets. My kid is still here today, but does that mean my regret is any less valid than hers?
((Spoiler alert: She virtual slapped me when I even tried to make the comparison.))
Reality is that there is no guaranteed correct answer. There’s no guarantee that if I leave AJ in school that he will get sick. Just like there was no guarantee that her daughter would get sick. And there’s no telling what missing half of a school year is going to do for a kid’s development either.
After we got off the phone I thought about all the other decisions I’ve had to make in the past week or so:
❓Should we go trick or treating so he can have the experience even though it’s cold? Or keep him inside where it’s warmer?
❓Should we still go to Philly this month for more airway procedures where he would be in the hospital during cold and flu season? Or should we wait until spring and risk him potentially going backwards and needing more work?
❓It’s been 21 minutes since I have him his meds and he just threw everything in his stomach up. Should I redraw and give him his meds again? Or should I let it go and hope he tolerates today okay without them?
❓Should we reschedule tomorrow’s doctor appointments? Everyone in the house seems to be coming down with something and he didn’t sleep well last night. Or should we still go so we can make sure these new meds are working?
❓If we go, should we get his vaccinations now? Or wait until later when we have less concerns about him potentially being sick? Will there ever be a time this winter where that’s the case?
❓Should I let him taste my soup or not? There’s gluten in it, and we don’t know if he has issues with gluten or not anymore. But we really want to promote eating by mouth…
And the list goes on.
Being a parent is hard. Being a parent of a medical kid is harder.
You can try to fight me on this if you want, but I’m too tired to bother arguing.
Fact is that there is no truly right decision to any of these things. And quite frankly what we feel is right for for AJ may not be the same as what someone else would choose under the exact same circumstances, and the outcome could be different from one moment to the next.
My friend and I definitely aren’t leading parallel lives anymore, but we were able to come to some common conclusions:
👉🏻 We make the best decisions we can with the information we have. Sometimes we have medical studies and journals full of information and statistics. Sometimes we are trailblazers and all we truly know is our own kids. But we all do the best we can.
👉🏻 We try our best to balance the fragility of our kids lives with our desire to have them experience the world around them in a “normal” way. Sometimes it means that we take risks so they can participate. Sometimes it means that they miss out. Life for us is less of a merry-go-round and more of an off balanced teeter totter.
👉🏻 We can’t protect our kids from everything, even when we think we can. Even in a perfect school environment where nobody sends their snotty kids to school, kids are contagious before they show symptoms. Even if we pull AJ from school, his sister or his parents might bring germs home too.
👉🏻 We often want to blame others for unexpected outcomes, but in many cases it’s not truly anyone’s fault – and even though that’s really freaking hard to accept sometimes, it’s really important to learn.
👉🏻 Along with that — non medical parents, and parents who make decisions differently than we do typically just want what’s best for their kids too. I don’t want this to be a pro/anti vax post, but it’s a big parenting debate and makes a good example. People on both sides of the fence feel they are making the right decisions for their children, even if people on the other side of the fence think they’re wrong.
👉🏻 We feel judged for almost every decision we make. Even if nobody says a word, we can feel the judgment internally , “of course you should xyz, why would you do anything else?” And “I can’t believe you chose to xyz…”. Sometimes the judgment is real and spoken. Sometimes it’s all in our heads. Either way, it doesn’t serve us and we need to let it go.
Looking back at this list, it really (mostly) applies to all parents. Not just medical parents. But those risks are definitely bigger when you have a medically fragile kid under your wing.
This evening there were a lot of tears (and potentially a lot of playful cuss words) on the phone between us. I’m thankful that she still speaks to me and to have her perspective in my life, and she says she’s thankful for me – but she said it with cuss words, so who knows 🤷🏼♀️ 🤣
Tomorrow she is going to volunteer in what used to be her daughters kindergarten room. She is taking in treats and serving as an assistant. She may also possibly slyly drop off a few gallons of hand sanitizer.
As for us – AJ is going to go to his doctors appointments tomorrow. Maybe. Unless he seems sick in the morning. In which case we will start this whole process all over again…
