The view outside of Bertrand's hospital room: a double rainbow.
With all our heart, thank you.
Rushing Bertrand to the ER and the subsequent PICU admission were scary.
But, we've seen worse.
Bertrand is tricky to diagnose, but doctors managed to identify the cause of his illness quickly. And then to have it be bacterial and treatable? That is all good news.
The most surreal part of this entire episode has been that we had an NGLY1 community/family behind us for the very first time.
- The Wilseys were the first to know we were headed to the ER--before our own families.
- The Leftwich family coached us on exactly what to expect and do with mycoplasma pneumonia and offered support.
- The German NGLY1 mom sent funny memes which cheered me up.
- And, Pam Stinchcomb was my angel, holding my virtual hand through a mini breakdown. (The 19th was Winston's 1 month birthday. Will every one of his birthdays be in the hospital and all about his older brother? Will he resent Bertrand? etc.)
To be clear, we've always felt love and support from our friends in the broader rare disease / special needs / undiagnosed community, but to have people who knew *exactly* what we were going through, and *exactly* what we were feeling? It was transcendent.
I'm overwhelmed with gratitude and joy.