I'm sitting in one of the waiting rooms while they attempt to close Griffin's chest after having it open for 14 days, despite his lungs still not looking great. But he's off ECMO as of Friday last week and slowly making progress, and we don't know until we try, so it's time. It's been two hours so I'm guessing/hoping/praying they are successfully accomplishing everything they set out to do. I am exhausted after a long day - well, a long few months.
I'm listening to Judah and the Lion's "Find Another Reason Why" (one of Griffin's favorites) and the lyrics hit me anew as I watch other families congregate in the various waiting rooms, trying to find some enjoyment in their time out of the unit, finding companionship, releasing pent up heartache, getting a much-needed nap, waiting on the many unknowns:
Go fall apart Rip out my heart Let the pieces crumble into nothing Until it's just true
Take some time Clear my mind Find another reason why
Clear out my eyes Spit out my lungs Scream it out up and down Seasons go and come
Run for my life and don't turn around Sometimes you've gotta get lost If you wanna be found
Take some time
Clear my mind
Find another reason why
None of us know what's going to happen next. None of us are always ready for the next season that we'll be asked to move through.
Maybe sometimes we just need a waiting room to remember we're all walking in the unknown, fall apart for a minute, soak in the ambiguity of life until its touch hurts a little bit less, and find a way to do the next right thing - maybe even with a smile and little lighter heart. Naps help too.
Your passion for your child moves me and know doubt moves them.
The understanding of this condition involving the deleted genes our children have will only come to be understood by the efforts of us as WS parents. Because we bring the individual in front of the doctors.
We are the frontline care providers and our knowledge and understanding could not possibly be understoood by a provider unless a provider was the care provider of their kid.
you know what you see but you need the medical education to read what you understand is happening.
keep pushing along your journey I promise you just like the drugs your child is on are remodeling your heart, so to is your heart…