The Opposite of the Hospital

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.

IMG_1452

1 of 66 days in the hospital in 2014. We tried to make the best of things, but there is nothing easy about being in the hospital.

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.

IMG_5585

Dec 2014. J picked out this outfit and asked me to send it to her wish coordinator to show that she was ready for a princess room.

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.

IMG_1661

Jan 2015. Alex helped paint the shelves lavender.

SONY DSC

Designed and executed by Steve. No shortage of Hello Kitty in this house.

. Grandma, an expert seamstress, found a way to make J’s hospital bed beautiful.

IMG_0604

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.

IMG_0607

All of J’s furniture came from a beautiful shop in West Linn, OR called Fleur’s Vintage Charm. The owner, Kathy, refinished each piece for us.

IMG_0606

This dresser was less expensive than Ikea and is infinitely more princess.

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.

IMG_0644

IMG_5952

Before

SONY DSC

After

IMG_0646

Julianna had a special visitor: Princess Rebecca. (aka Miss Oregon 2014)

IMG_0599

We got Alex a royal costume so that he could join in on the fun. He was a good sport about it — for about an hour. What can we say? He is more ninja than prince.

IMG_6034

When Julianna first saw her room, she turned her wheelchair around and around and took it all in. This was one of the last times J was able to use her power wheelchair. Shortly afterwards, her hand strength declined and she could no longer use the controls.

IMG_6044

The opposite of the hospital

This is a letter I wrote to Make-A-Wish.

17 Jan 2015
Dear Make-a-Wish,
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.
THANK YOU!

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.

4 thoughts on “The Opposite of the Hospital

  1. Thank you for sharing your experiences with others. You are an amazing writer. The unconditional love you have for your daughter is obvious. I am praying for your whole family.

    Like

  2. Michelle,
    Just thought I would let you know that my bible study group said a special prayer for Julianna and your family today. I pray that God’s strength be with all of you.

    Like

  3. Hi from Toronto Canada. I am really praying for a miracle for Julianna. My wife is also Korean and my daughter is around Juliannas age, they are all praying for her to. My daughter also loves Hello Kitty and Disney princesses , I know they would be great friends. I hope Julianna and your whole family have a great Christmas.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s