08 January 2018


We were discharged and arrived home at 9:30pm last night.

This morning, four out of the five of us didn't wake up until 10:30am.  It was so evident that each of us had much-needed sleep to recover.  It felt good to wake up feeling rested.

Since Brian had to go to work this afternoon, we spent the day as a family trying to make up what we lost over the last two days.  We unpacked.  We took down our Christmas decorations.  We shared a meal around the dinner table.  We rode bikes.  We played Barbies.  We rested.

Throughout the day, I found myself reflecting on our recent hospitalization - moments would flicker in my mind - no doubt an effort to process it all.

Today, I reflected on our super fun ER nurse who was with us the 10+ hours while we were there.  He was so on top of everything and made our time there as comfortable as possible.  He asked for things on our behalf even before I did.  (Really, all of our nurses were wonderful this hospitalization.)

I thought back to the Radiologist who made a really bad gastrografin enema just a tiny bit better by her attentiveness to details and compassion.

I laughed to myself today when I remembered how random it was that Bennett and I accidentally ran into our GI doc in the hallway after Bennett's first X-ray early Friday morning.  Although typically I will contact our GI doc to let her know when we go to the hospital, I hadn't yet had a chance to do so since we had come overnight.  From that point on, even though she wasn't on call at the hospital, she stayed in contact with all the doctors involved in our case and helped decide what should be done for Bennett.  In my disappointment of being admitted, she called and helped me better understand his situation.  I rested in the trust I had in her, that she knew Bennett's case well, that she knew we didn't want to be there and that she would advise the docs on whatever she felt was best for him.

I have continually been touched by the many friends and family who have reached out to us via text and social media letting us know that we're not alone, that they are praying for us and that they are cheering us on. 

This afternoon, I received a sweet email from Bennett's CF pulmonologist who had heard from her colleague that we were in the hospital and just wanted to check in.  She even included an email to Bennett to let him know she cared.

I really hate CF.  But these little moments of support and love are a bit like a mother's kiss - Nothing can take away the situation.  But connection of people who care does make it feel just a little bit better.

For everyone who continues to ride this journey with us, thank you.

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