1 Year + 194
1 year +194
IVIG today was mostly filled with all the familiar things. We were greeted by kind, familiar faces starting at registration. Familiar nurses and new faces too made sure vitals were taken, labs drawn, pre meds given, fluids run, nausea and headache attended to and IVIG hung. Shared stories as Lauren and Pringle hung out, a craft worked on, naps taken and 8 hours later, we’re on our way home. All expected and familiar which makes the mechanics comfortable.
What isn’t comfortable or expected are the emotions that came with today. As pain increases and spreads, labs remain off and answers remain hidden, there’s a lot of sadness that lies under the surface of everything. Today I saw tears as Tate looked at peers HOCO pictures and saw grimaces as I refilled the ice bags that cover her legs much of the time.
Tate will be admitted next week to trial the pain pump. We’ll likely get specific details tomorrow. This is positive as we’re hopeful it will help. But I’m just so so sad. I don’t want this for her. We aren’t supposed to be in this position. once we get to the actual surgery, it’s a big deal for an immunocompromised kid with a 6 week recovery. And ultimately, it’s a really large bandaid. It doesn’t halt anything or fix the underlying issue. Processing all this crushed me today. There are no answers and currently, no real direction. We wait day after day, weeks on end. I’m so grateful for the familiar hospital faces that were sitting in hope with us pre transplant and were there to offer hugs today with where we are now.
Tonight we came home to flowers and chocolate left on our front step. Left without a note and meant for the whole family, but really had an impact on my bruised heart. This journey is honestly so lonely. It’s a really long and exhausting journey for friends to ride out with you and I can’t be the kind of friend they deserve. There isn’t enough time or energy to set and keep ‘dates’ and so relationships that are untended fade. Yesterday we were reminded by our church family, that people are still here, as they celebrated Tim and 20 years in ministry. Today I was reminded that there is a local friend who showed simple love through this beautiful gesture, anonymously, needing nothing in return. This was salve today. Thank you to whomever you are. And thank you to all of you for the continual reminders that there are so many praying. We are so grateful.