April 29, 2025
2 years ago! A year out of transplant and we took a leap and made beautiful memories on this trip. We thought it was the beginning of many more. That things would continue to improve and envisioned future days would look much different than they actually do. This photo creates emotions of joy that despite the risks, we did it and had an amazing time. But also grief that those days are getting more difficult to find and a trip like that now feels so out of reach. It isn’t about where you go or even really what you do. But do the things. You never know if life will change so that you no longer can. There isn’t always tomorrow.
Tate’s primary care provider is Dr. Fox in special care clinic. He’s very likely one of the most loved and respected hospitalists at Children’s. We feel the same. He’s measured and calm, kind, compassionate and caring. He always shows up. He’s my biggest cheerleader, always with an encouraging word and one of validation. He told me he thinks of Tate a couple times each day. Yesterday’s appointment with him was emotional. Tides are turning and the goals in Tate’s world are shifting. The strange thing is, our hearts and minds have been there for a while now. Admissions tend to muddy the water. It’s when things are spoken out loud that you are forced to process the emotions. My heart is aching and also I’m grateful for photos like the one above. For the memories attached.
This week is busy enough each day with the normal telehealth appointments, an ultrasound to say hello (hopefully farewell) to Clottia and…what was the other blood clot’s name? And still working through all the legal medical that came with turning 18(super over it!) Therapies are getting closer to being approved which will dramatically increase the busy in our week. (But also means we get to see Abby and Meg again!) And Tate gets her Colorado ID (in lieu of a drivers license.) We added more daily IV fluids, more vitamins and will meet with our outpatient palliative NP. I’m appreciating the flexibility at home with pain meds to help Tate get a better nights sleep, but am not sure yet of a plan moving forward.
There’s gratitude in every day. Being together with family, my sweet Tim, puppy snuggles, an open window with a breeze, hearing the birds, coffee in a mug, hot showers, the smell of lilacs, long walks with Keira and the dogs and uninterrupted phone chats with my boys.