The past few weeks we’ve dealt with a few minor health issues with Abi. When you’re the parent of a child with unique health needs however, “minor” can very quickly feel “major.”
For example, Abi has been dealing with pollen allergies. This is not a big deal, until you notice a small fever, recall the MANY times the doctor has mentioned the possibility of “fever-induced-seizures”, and then you go into mama-alert “GET THIS FEVER DOWN NOW” protocols.
A dose of Tylenol and a cold cloth to the head later and the 100.0 has reduced to a much more reasonable 99.9. (Seriously, that one tenth of a degree is illogically comforting.) Two hours after that you’re back in the 98 range and all peace has been restored to the land. (Cue the pouring of wine and the beginnings of a Golden Girls marathon.)
I am someone who didn’t call anybody when I lived alone and had the flu with a 104 temperature in college. I rarely take even the simplest of over-the-counter medicines and I typically feel that a few gallons of lemon water and a good night’s sleep can cure most things. All that to say, the good news is, I’m not an alarmist. The hard news is, for parents who have children with unique health concerns- there’s a fine balance between being vigilant and entering into a mild panic when something new arises.
Example #2: This summer we discovered some very odd bumps at the top of Abi’s ear. They didn’t hurt her but when Sean touched them, they popped easily and within twenty minutes her ear was extremely swollen. Her PT showed up during this time and we all sat there staring at her ear, totally perplexed. Abi was calm and happy until she heard us all speaking in worried voices and then the tears began to fall. I quickly told her all was well and it was “so not a big deal” and the rest of the night she was her happy-go-lucky self. I called the after-hours doctor’s office and the nurse suggested that as long as the swelling didn’t get much worse and a fever didn’t develop, we could wait and go to the doctor the next day, (thus avoiding the ER.) This was super comforting until the nurse said, “Just keep an eye on it because the ear is a big deal and we don’t want it to be staph.” Good gosh…. Throughout the night Sean and I snuck into her room and used our phones as a light to look at her ear. It wasn’t worse, but it wasn’t better. Long story short, we made it to the doctor the next day and her diagnosis was a mosquito bite gone awry. (Insert deep breath and more Golden Girls.)
Like I said, minor issues. Thankfully we haven’t had the threat of a health concern for a while now and I almost forgot how stressful it can be. Even though those things feel small, a potential visit to the hospital does not. And while I’m super thankful for an incredible children’s hospital so close, I have strong memories of how difficult it can be to find a vein, how hard it is when Abi’s upset and connected to two million wires, and most of all, I don’t’ want Abi to be scared.
I have friends who have lived in hospitals with their kiddos for months at a time, with unending questions, foggy answers, and pounds of anxiety on their chests. I often think about them and wonder how they manage when something “slightly amiss” presents itself. You become a barometer of “this feels okay” to “Something feels really wrong” – with intuition being your greatest guide.
Over the past year I’ve had nearly every fellow mama friend of a child with special needs wind up in the hospital with their kiddos for something. Some scenarios are very severe while others are more easily treatable. I do think, whatever the cause, once you’ve been in the trenches, each “minor” thing can make you wonder if it’s connected to something bigger and I’m thankful for fellow women in my life who understand.
I’ll leave with this little story…
One common side-effect of having limited mobility is digestion issues. Because of this, we are in a constant teeter-totter of keeping everything moving in Abi’s system. Occasionally this lands us in a place where Abi is in writhing pain and going to the bathroom is an intense struggle. A friend of mine has a daughter who has similar needs as Abi. She just happened to be on her way over one night to grab something from my house when I told her that Abi was experiencing severe constipation. Around 10pm the 4 of us (Me, her, Sean and her husband) were on our porch hanging out, and the topic of our girls’ stomach issues was mentioned. She explained what they did to help and gave me some of the meds her daughter uses.
A few hours later I got a text on her way home, “Wouldn’t want to talk shit with anyone else.”
Annnnnd scene. That’s how you get through the seemingly minor stressful moments. You say them out loud, let them fizzle, and breathe deeper as you notice the worries feeling lighter.
And PS- Two days later the meds began working and in the 11th hour a trip to the emergency room was avoided. (All the praise hands… And everyone said Amen.)
And that’s all I got today.
Cheers friends and Happy Back-to-Work-After-Labor-Day-Weekend-Day.