July 21, 2014

What does community feel like?

The view outside of Bertrand's hospital room: a double rainbow.

The love and support from everyone has been palpable.

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.


  1. I'm so glad for you to have community and support in a way you've never known before.

    It is somewhat ironic that a few weeks ago, feeling Might withdrawal, I was wondering if your blog would become dormant because life was so normal and stable for you now. (That was before I knew Winston was in the cards.) I thought maybe the journey was so predictable that you wouldn't feel the need to post so much.

    You're in my thoughts. I hope to read of Bertrand's continued improved health and return home shortly.


    1. Aw! Thanks, Jennifer! Bertrand is giggling and happy in his hospital room. They just switched him to a nasal cannula.

      The pregnancy was very hard on me physically, so I am glad to be back and posting. Things are never boring around here. :)

      Best wishes!