I want to take a moment to put things in perspective for everyone who loves and prays for Miller.
There are days when it feels like we are barely surviving. I don’t really have adequate words for how hard this road has been, or how draining it is in ways I never knew were possible. I wouldn’t wish this kind of pain on anyone. Some days I feel like I’m living in survival mode, and Miller is living in fight or flight.
And yet… I am overwhelmingly thankful.
Thankful that Miller is still here.
Thankful that he is still fighting.
Thankful that, even after everything, he is starting to turn a corner and find a little bit of hope again.
I have seen him lose hope.
I have seen him lose trust.
I have seen him lose faith.
So watching him keep going because he wants his life back means more than I can ever explain.
I can’t tell you how many times I’ve dreamed of the simple things…
Miller going back to school.
Throwing a football with his brother in the yard.
Playing HORSE as a family (because that’s about the only basketball I can play!).
Going on a vacation.
Being at home and feeling safe.
Those things may seem small, but to us they are everything.
Thank you for carrying us in prayer and in so many other ways. As I write this, tears are running down my face because we truly feel the love surrounding our family.
We do have a continuity provider that we have quickly come to love, she is one of the ICU docs that we met early on, and she has been absolutely phenomenal. She is already providing care for Miller in the way he deserves, with real, authentic excellence. I will always advocate for that kind of care for him, because this isn’t just a season of being sick for Miller. This is his LIFE, and he deserves to be treated as the incredible, joyful, deeply loved person that he is.
We also got to see Frankie this past weekend, and it absolutely lit him up. We are so thankful to Nana Cindy and Papa Rick for caring for the dogs and making that visit possible. It meant more than I can say.
We’re hoping to have the other kids come this weekend, and I can’t even begin to explain how much I miss Fisher and the girls. Every time I think about it, I cry. I was made to be a momma and I feel it to my core! I’m meant to be close to my babies! Being apart from them is one of the hardest parts.
Medically, it seems like the multidisciplinary meeting yesterday went well, and teams are working together to find solutions for Miller. The hard truth is that his panic attacks, anxiety, and PTSD are the result of a childhood spent in hospitals, combined now with the very real air hunger he experiences from severe lung disease. When you can’t breathe well, anxiety follows, and for Miller that anxiety can quickly become panic.
Everyone is working to figure out how to best manage this, but ultimately the only true fix for his lungs would be a transplant. That conversation is still tabled as doctors carefully weigh the risks, especially given his history with leukemia. For those who may not know, Miller is leukemia-free with 100% donor cells, but his type of leukemia carries a high risk of relapse, and they are trying to determine what a transplant could mean for that risk.
This transplant truly is the Hail Mary. There are no other treatments or options for his lung disease.
So prayer warriors… please keep praying. We feel those prayers. We need them more than ever.
We are struggling, but we are strong.
I’ll share my Venmo for those who have asked for it.. @mrsmirandagriffith
Thank you for loving our boy. Thank you for praying. Thank you for carrying us. #butGod
#keepgoing
#mightyMiller
