"Home" for the Holidays at Riley
This is my daughter Sawyer. We spent so much time in the Riley Cardiovascular Intensive Care Unit with her, we considered forwarding our mail.
Sawyer was born with a rare and complex heart defect called Hypoplastic Left Heart Syndrome. In short, this meant that the left side of her heart was underdeveloped and didn’t function, leaving the right side to do all the work.
In her first year of life, we spent a few short weeks at home. The remainder of that time was filled with open heart surgeries, lifesaving medication, ventilator weans, ECMO life support, heart failure, kidney failure, and the amazing gift of a heart transplant.
It’s hard to live in the hospital, especially at first. But, after a while, it becomes so routine that you forget you haven’t lived there forever. The various beeps and noises of the ICU, the beautiful glass tile in the green elevators, the smell of hot coffee from Copper Moon, the rotating menu of the hospital cafeteria, it all becomes so very familiar. At some point, you go from being a visitor, to being a resident—helping people who are lost find their way, welcoming new families whose child has just had surgery, and chatting with the nurses about their kids, dogs, and whatever they are watching on Netflix.
I remember this time last year, as the holidays were quickly approaching, everyone became acutely aware that we were in the hospital. They said, with sad eyes, “Oh, I hate that you have to spend Thanksgiving at the hospital,” or, “I’m so sorry you won’t be home for Christmas.”
Though we didn’t celebrate the holidays how we have traditionally over the years, we were home.
Home is wherever our daughter is.
We may not have been surrounded by family in the traditional sense, but we were certainly surrounded by love. We made some adorable footprint art with Child Life Specialist Jenna Yarnell. We had a delicious Thanksgiving feast provided by kind volunteers. We had two Christmas trees that lit our room in a magnificent glow, provided by some of the most amazing Riley workers you will ever meet. Music therapist Lauren Servos sang Christmas carols with us. Nurses dressed our girl up for holiday pictures and made certain we gained our holiday weight with lots of sweet, delicious treats.
I never felt sadness about spending the holidays in the hospital, because the hospital was home. And those incredible nurses, doctors, respiratory therapists, and child life specialists? They were, and always will be, family. It is because of them, that my daughter is here and thriving to spend this holiday season outside of those hospital walls. And now, as the holidays quickly approach, I am acutely aware that half of our family, half of our heart, is still right there are Riley. But I know they are keeping busy, taking care of other families, and finding little ways to make their season magical.
By making a donation to Riley Children’s Foundation’s “The Gift of Hope Happens Here” campaign, you will help put smiles on the faces of children and their families this holiday season. We are so grateful to everyone who considers spreading a little hope, joy, and love to Riley families.
#GiveHope at RileyKids.org/Donate today.
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