A Heart Story: Emerson's Hospital Holidays

The text below is adapted from what I wrote on New Year’s Eve, 2024 – a time of great uncertainty for our family. I hope it gives you a “snapshot” of holiday life at Children’s—both the challenges and the moments of joy that we experienced.

Wherever you are on your child’s journey, we wish your child health and happiness.

A highlight of December was the snowstorm on the Friday before Christmas. Emerson and some of the other patients got out into the Wishingstone Garden to play in the snow.  This wasn’t easy to arrange – all the gardens had been locked because of the snow.  I used my “powers of persuasion” to convince a security guard to let us out. I mean, when you’ve been in the hospital for months, and it’s the first white Christmas in eight years, I think playing in the snow is a given!  Some of the kids were not medically able to go outside, so we also brought bins of snow back to the unit for them to play with.

On Christmas Eve, I took Harper, Marin, and Emerson’s grandmother to the hospital to visit and exchange gifts. We all attended a Christmas Eve lesson in the chapel, ate Chinese food, and watched a Christmas movie Once it got late, I headed to the Inn at Longwood for the night with Harper and Marin. Once we were safely out of sight, Allison and Emerson set up the presents at the hospital for the morning!

Christmas Day was nice, but exhausting.  The hospital catered a nice meal, and everyone opened presents. Late in the afternoon, Harper, Marin, and I headed home, the kids shedding many tears that they had to leave each other.  I can’t remember ever being so tired!  The emotion of it all is one thing, but moving presents and transporting everyone while Allison and I try to keep everyone happy . . . I’m no Grinch, but I was glad it was over!

The days after Christmas were much quieter and more restful.  The Christmas/birthday week tired Emerson, and she spent more time resting.  The unit hosted some fun New Year’s crafts today and did a countdown at noon (brilliant!).  On New Year's Eve, Emerson was excited to watch Wicked, which started streaming today. So that was our New Year’s Eve plan, with a brief break to watch the 7 pm fireworks at the Common out the window.  There were no midnight fireworks for us!

On New Year's Day, Allison, the girls, and our friends headed in to the hospital for lunch and some games—a low-key and fun end to a holiday season that began in October with preparation for Halloween. Thankfully, Valentine’s Day was far enough off to give us a chance to catch our breath—and we hoped to be long gone by then.

In the weeks before Christmas, the hospital chaplaincy organized weekly Advent activities for patients. During one of these events, the chaplain shared the part of the Christian nativity story where angels announce to the shepherds, “Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people!” She then asked the children, spanning ages three to the late teens, to reflect on times when they found it difficult to hold onto the angel’s dictate to “fear not.” The answers, of course, mirrored the experiences of these kids: fear of surgery, fear when they learned they would need a transplant, fear of being away from family and friends, fear of not being granted a visa to stay in the country for treatment, to name a few. Some childhood fears are very, very real.

The conversation gradually turned to what the children wanted the chaplain to pray for on their behalf. One would naturally expect the ordinary childhood asks—various toys, money, video games, etc. However, the first to answer was a four-year-old who, rather than asking for a toy, yelled out, “Hope!” Other children quickly chimed in: “Strength for our moms!” “Happiness for the doctors and nurses!” and from one child, “Peace for the families who don’t yet know their child will be a donor.” At this point, and rather unexpectedly, there was no dry eye in the room.

In the midst of their own trials, this group of kids did not turn inward or despair—perhaps because each other's suffering surrounds them—but instead turned outward to think about and pray for others. In that space and in that frame of mind, they found happiness and hope for themselves by centering on others.

Now, I’m not trying to oversell this, and I’m not getting a stipend from the Hallmark Channel! None of these kids are saints (well, maybe Emerson!!)—they disagree, have bad days, and need limit setting. Christmas Eve and Day at the hospital were a whirlwind of relatives, gifts, food, good memories, bad memories, and meltdowns (kids AND adults). It was messy. This whole situation is messy. Life is messy and, at times, very hard. The quiet, dark post-holiday month of January looms on everyone’s mind.

Hope for the New Year

These children wait  in the shadow of pain and suffering,

in the shadow of disease and mortality.

May this wait end soon,

with the donation of a healthy organ;

a successful transplant and a speedy recovery;

the return of running and jumping,

laughter without the need for rest;

the replacement of fear and anxiety

with confidence and peace.