Have you ever felt like the universe was testing your limits? That’s where I’m at and have been since the start of 2025.
After the loss of a few loved ones and two hospital stays with Connor I thought maybe we’d been through enough for a little while. I of course never said that out loud though. We are all familiar with my constant fear of “the other shoe dropping”. So I’ve just been holding my breath and hoping for the best. Deep down a very large part of me knew that Connor’s symptoms post RSV weren’t getting better like we’d hoped, but ever the serial optimist, I held out hope.
The air was slowly being let out of my optimistic bubble beginning Thursday of last week. Connor woke up crying, which he rarely does, saying he was in a lot of pain. That coupled with increased bleeding earned us a virtual appointment with his GI team. Because Connor was still hydrating at home and not showing signs of dehydration, the plan was to schedule an endoscopy/colonoscopy for this week and see what was causing all of his IBD symptoms. As the weekend went on his symptoms got worse. On Monday afternoon Connor and I made the two hour trip down to CHOP for our third admission of the year.
It has been a long stressful week — from a late admission Monday night to a colonoscopy prep with a 7 year old Tuesday, to scopes yesterday that showed moderate to severe inflammation in Connor’s colon — we are cranky and tired. I kept holding out hope that we’d get out of here today, but that’s not happening, and we don’t know about tomorrow either. Usually that doesn’t bother me. I always miss our other kids and puppies at home, but know that it’s safest for Connor to be here with his symptoms are this active. I know that’s the case this time too, but it’s a harder pill to swallow, because for the first time ever, I won’t be home when one of our babies wake up on their birthday.
Tomorrow our beautiful Leap Day baby celebrates her birthday, but not just any birthday — she will officially be a teenager! My momma heart is split in half knowing that I’m where I need to be, but also wishing I could be home with Sadie at the same time. She is and has always been wise beyond her years and understands the situation, but I hate that she even has to be put in that position. As the oldest child she makes so many sacrifices, all of which she handles with grace, this time being no different. So our village at home is stepping up yet again to make sure our girl has the day she deserves. The grandmas have everything set for the morning, one of our favorite party planning cousins is on decorating duty, and her aunts are holding down the fort for the party. Jason is also going to head home so at least one of her parents can give her a big fat birthday hug.
While me and my buddy hang out so he can get better I’m going to keep focusing on the good parts of all of our stays here. Aside from the top notch care that Connor receives from some of the best physicians to ever do it, this time he got to hang out with two of CHOP’s adorable service dogs Woodford and Scarlett. After blowing his first IV and needing another one, he had an awesome vascular nurse who showed him not only how to safely remove an IV, but also how to use the ultrasound machine to find a viable vein. The people who work in this hospital have the patience of saints and hearts of gold. They teach while treating and are constantly showing their patients kindness. I will never take for granted the fact that Connor has the privilege of receiving care here. In the hard moments I dig deep to remind myself of those special interactions and the proud look on Connor’s face when he learns something new.
This week has been filled with a lot of hard moments, and when we get home my breakdown is going to be a big one. For now I’m going to muster up all of my strength and be strong for my baby boy while hoping the third time (stay) really is the charm.
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