Make-A-Wish has a well-deserved reputation for making magic. It’s an organization that everyone feels good about supporting. If you think about it, though, no parent really wants their child to be eligible for this gift. To qualify, it means you are dealing with a life-threatening illness.
One year ago, a social worker from Shriners asked if she could refer Julianna for a wish. I had mixed feelings. There was the expected: “Wow, how amazing!” and the unexpected (but rational in its own way): “Oh. I have a child who is eligible for Make-A-Wish. We are that family.”
I know it sounds ridiculous. It was already abundantly clear that J had a life-threatening disease. In fact, we just had made the agonizing decision of starting palliative care, but weren’t quite sure what it meant for us yet. One thing was certain: we wanted to focus on Julianna’s quality of life. It was the perfect time for a wish.
After your child gets accepted for a Make-A-Wish, a “wish coordinator” is assigned, and the planning begins. Many wishes involve travel, but for our fragile, increasingly-BiPAP dependent daughter, it was clear that her wish would need to be enjoyed at home. When our wish coordinator suggested a room makeover, J’s eyes lit up. The choice was easy: Julianna wished for a princess room – a pink and purple one with sparkle.
It usually takes several months to plan and execute a wish. I honestly did not know if we had that much time. It was the middle of germ season, after all, and J had proved time and again that, in her, a runny nose meant impending respiratory failure. It was just a few weeks before Christmas, so I understood that there would be delays. Our wish coordinator was quiet for a few moments after I voiced these concerns. She told me that everything could be ready in a few weeks.
From there, things went quickly. We decided on a theme (elegant princess, not Disney princess) and a color palette (cool pink and purple with silver accents). The talent and skill of the Snow side of the family came through in a big way.
Steve and Grandpa built floating shelves that looked like castle turrets.
. Grandma, an expert seamstress, found a way to make J’s hospital bed beautiful.
As for me, I did what I do best: online shopping. Every night, I spent hours at Julianna’s bedside researching chairs and chandeliers while coaxing her to sleep. I squashed my usual penchant towards utilitarian and discovered that there is life beyond Ikea. (It’s called upcycled French provincial, and it’s divine.) It was so much fun.
If this sounds frivolous, it was – a little bit. But here’s the most important point: it was exactly what we needed after our year from hell. It was the opposite of the hospital, the opposite of NT suction, end-of-life planning and ICU alarms. There was nothing sad or agonizing or overwhelming about any of it. As a family, we needed this — desperately.
On 10 January 2015, Julianna received her princess room.
This is a letter I wrote to Make-A-Wish.
17 Jan 2015
On January 10, 2014, our daughter Julianna was admitted to
Doernbecher Children’s hospital with a respiratory infection. She was
hospitalized for a total of four weeks, most of it in the ICU. During that
time, our hearts were broken in a thousand different ways. For many weeks, we did not know how things were going to turn out. Fortunately, she recovered and came home to us.
The last two years have been difficult in so many ways – she has had multiple hospital admissions and has become progressively weaker from a cruel neuromuscular disease that has no cure. The January 2014 hospital admission, however, stands out as our lowest, most desperate point.
On January 10, 2015, our Julianna was gifted with an amazing pink princess room with sparkles. It turned out even more beautiful than we imagined, and we do not think that the date was a coincidence. The whole experience with Make a Wish has been one of healing. Julianna has a stunning room that is
befitting a brave, vibrant and lovely princess who has fought many difficult
battles. It brings her joy every day.
We cannot thank you enough for making Julianna’s wish
possible. We are humbled and blessed by the dozens of people who gave their
time and talent and donations to give our family a magical experience.
I will add one more thing. When your child has a terminal illness, you don’t dream of things like high school graduations or weddings or baby showers. For families like ours, the Make-A-Wish experience can be that gorgeous celebration of life and love. You are free to plan and dream, and you don’t have to worry that you won’t see it come to fruition.
Julianna’s princess room is the most beautiful ICU-capable room I have ever seen. She loves it. Everything about our Make-A-Wish experience was perfect: it was the opposite of the hospital.