Today I left Cooper’s doctor appointment feeling devastated. I choked back tears as I dropped Coop at school, four and a half hours late. Why? WTH? Can we please get a frickin’ break?
In my head, today’s regular 6 month check in was going to be easy – check the boxes. Hug the specialists who have been taking care of us for nine years. Surgery recovery is complete and Cooper is feeling good! We’ve been seeing specialists this summer and have more visits upcoming. I think we are on top of it!
But this disease doesn’t stop. There is no respite.
- Time to beef up Occupational Therapy and Physical Therapy. Have the Physical Therapist fit Coop for devices.
- Too long since we’ve seen ENT – especially with Cooper’s new “loud breathing” I’ve been hearing.
- Then there was discussion regarding a surgery that MAY be far in the future to help the breathing. Not going there yet, but we’ve scratched the surface, on the same day Coop complained the edges of his scars from July’s surgery are itchy with scab and stitches still there.
- Hard discussions about mental health.
- Notes to watch for symptoms of spinal compression. Imagine hearing this after you’ve been through two spinal decompression surgeries already.
- Sleep study needs to be scheduled.
- Do it all sooner rather than later.
- Reminders to a picky eater and his mother to eat fruits and veggies. How did I not notice he’s dropped weight?
It is hard to process. It’s just so much. Relentless. As always, I will make lists and phone calls and we will drive all over to get the things done – to get us closer to the next step. I always thought the end of the list got us to a break, but it only brings up the next thing. It just sucks. And this is how I process it.
Thanks for hearing me out.
So what do we do next? Our friend Marty always says “There are no coincidences”, and I believe him. We happen to be going to Louisville, KY this weekend for the Rooting for Robert gala. But even bigger, Cooper gets to meet Robert, a little boy on the same Morquio journey we’re on. And our friend Colin will be there too – he’s fighting the same battles Coop and Robert do. Three rare little boys, one gala, hundreds of people lifting them up – raising money for Morquio research. Building community. So it’s no coincidence that after a hard appointment we get to gather with our community on Friday. And on Saturday, we’ll let the boys be “normal” kids again when we visit the Louisville Slugger museum. And they can be boys. No infusion, no surgery, no appointments, just normal boys checking out baseball bats. Sunday will be yet more fun – home again for Cooper’s birthday party, with a Savannah Banana’s theme.
I pray that one day Cooper and all those affected by Morquio will feel “normal”. I know Cooper wishes for it daily.
If you are interested in a great cause, check out Rooting for Robert.
You’ll find a familiar face in their video…
Rare Mom Life 
As usual, my friend, you have cut to the chase to simplify and name the biggest challenges we face as rare parents. It is hard to stay on top of every appointment and every medical issue that might pop up. We moms often feel like we are playing a never ending whack-a-mole game as we care for our kids. I love that you and your family always optimize and cherish the times when that hammer is on the way down or swooping back up. Sending you all a big hug♥️
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