Wall of Hope

Sometimes it feels like we’ve had more than our share of pitfalls, toils, and debility. But life never, ever fails to offer hope in the most surprising ways. I received a phone call from a member of the March of Dimes back in November. The woman told me that nurses and staff at the St. Alphonsus NICU had nominated former patients and voted for Keira to be one of the two children added to their "Wall of Hope" this year.

Keira got her portrait taken. It may, in fact, be one of my favorite pictures of her. It doesn't show off her million dollar smile and shining eyes, but it does accurately capture her beautiful self as we see her 90% of the time.

They had a little ceremony to "reveal" the new installations on the wall of the waiting room outside the NICU. They explained that the Wall of Hope is designed to give hope to families who are currently in the NICU, wondering what will become of their new, fragile infant. I was pleased that they picked a child (Keira) who did not necessarily "turn out" the way that any parent initially hopes, but who affirms life and joy in the midst of it all.

Keira's behavior was fascinating. This is typically the type of environment she does worst in, and it started out that way...with her retching and needing to put her headphones on, etc. But then she seemed to catch on that this was about her and she became so smiley and engaged and interested. It was just adorable.  

The inscription reads:

After a seemingly typical pregnancy, Keira was born at full term weighing less than 5 lbs. With a myriad of symptoms, she was rushed to the St. Al's NICU and was diagnosed with congenital cytomegalovirus (CMV). Keira stayed for 4 weeks to undergo an antiviral treatment. As a result of CMV, Keira cannot speak, eat orally, or sit upright. In spite of the discomfort she faces every day, Keira has an effervescent smile and is a joy to all who are lucky enough to know her. Keira's struggles helped inspire the passage of Idaho's first law furthering CMV prevention in 2017. 

I gave a mini speech:

Well...it's kind of surreal to be here. Even the smells, walking into this building, feels crazy. It was a crazy time. Most people, I'm sure, can't imagine giving birth, then being discharged from the hospital 2 hours later to follow their baby to the NICU. I thought she was going to be healthy. It was a whirlwind experience 5 years ago and we are really appreciative to St. Als and the NICU because we were just so disoriented, not expecting any of this, for her to be sick, let alone have the life long circumstances that she does. And this was place was just like a warm cocoon of a family that took care of us for a month and got us ready to go out and do what we needed to do with her. I'd like to say that parenting Keira has been and continues to be the biggest challenge I've ever faced, but probably the most rewarding as well. It just means so much to me when circumstances come up to make me aware that she is deeply impacting peoples' lives besides just mine. That just means so much to me. So, thank you for doing this.