Tuesday, February 17, 2015

Making a Wish

It started in the ICU. It was Jaycee's fifth time in the ICU for an illness. She was very sick, requiring a bi-pap machine to help her breathe continuously for days. Fortunately, it didn't get to the point of needing a ventilator, but she was close.

The social worker paid us a visit and recognized our family from previous admissions. She talked to us about seeing if Jaycee was eligible for Make-A-Wish. This wasn't the first time someone had mentioned this to our family, but this was the first time I actually gave it some thought. I guess after some major health crises within the span of a year it didn't seem right to wait to see if she was eligible. I decided I should pursue it for Jaycee while Jaycee could enjoy it.

I made the call to Make-A-Wish Illinois a few weeks after we got out of the hospital. There are some diagnoses that automatically make you eligible to receive a wish but Jaycee didn't have one of those. So instead, I had to give them a list of her conditions, medications, and doctors who had to be contacted to determine if she did have life threatening conditions. I hung up the phone and cried.

I wanted Jaycee to get a wish if she was eligible but her being eligible meant that her conditions are serious. It felt too real when I made this call. Sure, Jaycee has had two open heart surgeries, three heart caths, three other minor surgeries, and has been admitted to the hospital multiple times. She takes several daily medications, twice daily vest therapy for a lung cyst, and sleeps with a bi-pap for obstructive sleep apnea. In the past year, Jaycee has started to require special precautions for some type of staph infection on her skin, which has required weekly bleach baths to help control it. Her reflux disease has gotten so bad that we have taken additional steps like elevating her bed, limiting certain foods in her diet, and trying to eat the evening meal early. Still it seemed like I was admitting just how bad things have gotten over the past few years when I made this call.

I believe it took a few weeks to hear back that Jaycee was eligible for a wish. I was excited for her to have this opportunity. When the organization says you can wish for anything, they mean it. Nothing was off limits that they wouldn't at least look into. But, the child's doctor does have the final say if it is safe for the child or not. Staying in the continental United States was important to me for Jaycee's health and breathing.

I spent hours and hours googling and searching for things that Jaycee might be interested in. Her main interests are movies, tv, and the characters that go with them. So after much searching, it was decided to just do what many other wish families do: Disney. Disney Florida or Disney California became the decision. My husband and I just couldn't decide. So, we let our minimally verbal child decide.

I made these two pages and explained to Jaycee the differences in the trip in words she could understand. Then I asked, "Where do you want to go?"  We asked her about 10 times over a couple of days and she pointed to the page to respond. The winner was Florida by a landslide. So, our wish became to meet Barney the dinosaur (at Universal Studios) and stay at Give Kids the World, which is a special village for families specifically on wish trips. This also would give her the opportunity to go to the Disney parks and Sea World. Our doctor recommended that we go in the off season to avoid some germs, so February was our month to go!
I'll be sharing details about our wish over the next few posts, so come back if you want the rest of this story.

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