December 16, 2023
1 Year +295
Yesterday was…long! Originally scheduled for surgery at noon, they finally came to get Tate at 9:30 PM. Tate doesn’t eat or drink much on a good day, but being unable to eat or drink all day was kind of like being on a diet. You want what you can’t have. The exhausted surgery teams day didn’t go as they had planned either. Another example of how many families’ Saturday was hijacked for sick kids needing emergency surgery. But in the end, the line is out. Tate has had several removed but never one that had lasted this long. There’s an internal cuff that skin grows around to prevent it from just slipping out. It was anchored pretty well as she’s really bruised and was hurting pretty good last night. Those bruises will heal. This infection will clear. This is the simpler stuff in our world.
It becomes really easy to have all these admissions and tests and labs and surgeries become mechanical. Every once in awhile, it’ll all catch me off guard when I pause long enough to feel it. I was tired last night. When the anesthesiologist started listing all Tate’s big dx…MT8, lupus, behcets, EDS, POTS, AI, Bone marrow transplant (to leave out the lesser ones,) it struck me a little. In discussion of her latest RSV bout and his concerns with anesthesia, he asked if she’d been able to run around and go up and down stairs with no problems. It was an innocent oversight, but when the answer was that she uses a wheelchair, it stung a little. Tate says little but I see the light dim in her eyes for just a moment as she processes the same. There’s so many parts of a chronic medical journey that isn’t seen in photos or updates. We glaze over most of it too as that’s how you survive. Most days my heart feels shredded and tattered. There are moments when Tate just flat out refuses any more meds or infusions or therapies or to even look at or speak to another Dr. When the tears just flow because she can’t “just deal” with the physical pain for one more minute or the emotional pain seeing all the things she misses out on as a teen or the difficulty in planning an unknown future. Social media sometimes brings out the meanies. This medical life isn’t by choice. The “free” stuffies and medical dog visits, sports game tickets, etc don’t outweigh the challenges. The “attention” given on a social platform is often surface. I’ve offended well intentioned people by not trying what they believe will cure Tate, or joining their calls or ordering their products. There’s so much that you can’t possibly see on FB to understand the reasons behind our choices for and with her. And the FB version is always the rosiest one. I ran into one of our very first infusion nurses the other day. She knew Tate starting when she was 9. She saw the bubbly sprite who bounced in for her treatments and would dig deep to walk out afterwards. She’s also watched as so much has been stripped away. To have someone remember the before….this wasn’t always our life. This isn’t all we are. This isn’t what we’ve chosen.
Yesterday brought some hospital excitement when suddenly a Grinch was staring through our window about 2 feet from where I was sitting. I was a little slow to recover and get Tate over and grab my camera but it was a fun surprise as he was rappelling off the side of the hospital. Later Santa surprised us the same way. The firefighters do this a couple times a year-as Christmas characters and also super hero’s. You’re never too old to enjoy it. A while later we noticed a plume of black smoke out our window. A huge apartment building was on fire down the street, across from Brent’s Place, where we lived after transplant. It was vacant as it was still under construction, but truly devastating to watch this huge project go up. My heart hurts for all those who are now out of work, dreams are crushed, etc. Gosh, life is hard Y’all. As I stood watching that complex burn, behind me was a different emotion being shared. Christmas carolers. A sensory dichotomy. A beautiful reminder in the hope and love that this season brings as we celebrate the birth of the Savior of the world!
I hesitated to do this as my girl, Keira doesn’t like the attention. But sometimes the benefit of prayers outweigh the discomfort. She is having a brain MRI today. Recent symptoms have us on edge. Please just pray that it’s all clear.