Make A Wish

The Make-A-Wish Foundation grants the wishes of children aged 2 1/2 to 18 years of age whose physicians affirm that they have a life threatening medical condition. Little did we know, that includes children that have been through a life threatening illness. For those new to Seven and his life story, a little over two years ago Seven had hypernatremic dehydration and spent a very long month in the PICU at Phoenix Children's Hospital. He was lucky enough to have made it through alive, although he did sustain some brain damage that changed his life forever. For details, you can read the previous 28 blog posts. They detail all the happenings of that event. (Read at your own risk. I recommend an empty stomach and lots of short breaks.) It was just after that event that our family was approached by Seven's Speech Therapist Jenn Buck. She said she knew another family that just went on a trip to Disney World for their child's wish and it was amazing. She said she thought Seven would love it and asked if we would mind if she referred us for a wish. We hadn't ever thought about something like that for Seven. We thought Make-A-Wish was just for children with a terminal illness. She told us that being through a life threatening illness meets the criteria also. So we said yes.

Jenn went through a lot of work tracking down doctors, filling out paperwork and following up. It was at least six months later that we got the letter. Seven would be granted a wish. It stated that a team would be put together and the wish process would commence. And then... silence. I forgot about it for a while until Jenn asked me what was going on with it. I called and left a message and when they got back to me they apologized profusely. They said a team was put together and then one of the volunteers had something happen complicating life and they would send someone out immediately. They asked about Seven's likes and dislikes and if he had any siblings. Brittany, from the Foundation, came out to the house and brought presents and balloons for both Ocean and Seven. We talked about Seven and came to the conclusion that Seven would enjoy Disney World the most. He loves to be jostled and spin around and loves water (they have waterparks) and Buzz Lightyear!

Well the time has come... We leave October 9th and don't return until October 15th. We will be staying at the Give Kids The World Village as they have a partnership with Make-A-Wish and whenever a MAW child goes to Orlando, that's where they stay. (I would definitely check out both www.gktw.org to see what the Village is like and http://www.wishaz.org/ to see other kids' wishes. The stories of the first two wishes granted are amazing reads and very inspiring.) Give Kids The World is a wish in itself. Santa visits every Thursday and there is a huge birthday party every Saturday. Apparently the kids are going to be showered with gifts and never told no. This truly will be the trip of a lifetime. (As a side note... How do I explain to a five year old that this upcoming week is going to be the best of her entire life? That every vacation after this one will pale in comparison? And that no moment in the rest of her life will even come close to being as amazing as the upcoming week will be? Five is a pretty young age to peak. Yikes. Good luck with the rest of your life, Ocean.) ;) The kids were both given a bag of new toys to occupy them during the plane ride. Speaking of the plane ride....

We have never taken Seven on an airplane. We took Ocean on a short jaunt to California when she was a baby. That was panic inducing in itself. And she is typical. For all the parents of typical kids out there: Doesn't the idea of a plane ride and even the airport process alone scare the living stuff out of you? Imagine that with a special needs child. You probably can't. Even I couldn't a couple weeks ago. I put off thinking about it until the last possible second because I was so nervous and anxious. And then I realized I better get to work or this wouldn't happen at all. So I started researching. I talked to another Make-A-Wish to Disney World mom. I spoke to my son's Pediatrician. I went on the Southwest Airlines website and the TSA website. You know that only 3 oz of fluid rule to get past security? Ummm.... Seven has medication that is specially compounded for him at an Apothecary Shop that he takes 1-3 times a day. And most of them have to be refrigerated. I found out that it is possible to get them past security but they all have to be labeled with the Rx info on it AND you have to have a letter from a doctor. So I'm working on getting that... For all 20 of the medications we need to take with us. We probably could safely check at least 5 of those but all the websites say to bring ALL your medication on board with you. That seemed weird to me until I imagined the conversation between me and the airline when they lose our luggage. "I'm so sorry that your luggage was accidentally shipped to Uzbekistan. Well here is your "Essentials Kit" to get you by until we can ship it back... after getting it through customs twice... No, ma'am there is no anti-convulsing med in there. Nope. No Ativan either. He has seizures without his meds? Are you sure that toothpaste and shower cap won't help? That's weird... It says "Essentials Kit" on the bag... His medicine must not be all that essential..." We also need to bring on the plane his suction machine with more than 3 oz of saline spray in it and an open bottle of water. He can't go 5 hours without eating so we need to bring his food pump too. And you can't mix up the food before getting through security because that would be more than 3 oz of unlabeled liquid... The list of things to think about goes on and on. The TSA has a really funny video showing what it is like for someone with special medical needs to go through security. It is the one older man walking up with a little black bag. The agent opens the bag, pulls out a tiny bottle, signs a tiny paper and hands it back to him. And that's it. Right... That is exactly the same situation as Seven in his stroller/wheelchair with suction machine and catheters and 20 medications. Everything about Seven is so complicated. But Make-A-Wish goes out of their way to make everything as easy and smooth as possible. Which bring us to...

My saving grace and full calming breath came when they asked us if we wanted anyone else to go on the trip with the four of us. We looked at each other and I'm sure Jarrad was thinking the same as me, "Who else do we ask to come with us? Brad Pitt and Angelina Jolie? All of Ocean's friends and our extended family?" But then our eyes set on Jasmine, our full time nurse for Seven, as she was folding towels and pretending not to be listening. (We love you, Jas!) Yes that is exactly who they meant. A nurse. And boy did she jump at the chance! She might be more excited than Ocean. She is truly a kid at heart and the absolute best nurse to come with us for that reason. She is young and has no children to take care of at home. We are so so excited that she can come with us and help out and share the joy. Did I mention I was so excited that Jasmine is coming? I definitely recommend, while vacationing with children, if at all possible make sure the adults outnumber the kids. :P

So I chose this time to restart the blog because I want to document this trip as best as possible and be able to share the joy and adventure with as many people as possible. (And maybe a little bit to placate the people still peppering me with questions about Seven and what happened to the blog.) But mostly to share the happiness. Every time I read a wish story my eyes well up with happy tears. I hope I can do that for other people with Seven's story. The other wish mom I spoke to told me that their trip changed their child's life in amazing ways. His first real sentence was at the end of the trip when he had to say goodbye and he said to Mickey Mouse, "It's ok, Mickey. Don't be sad. It'll be alright." Well if I had my one wish, it would be that I could tell that kind of story about Seven. Here's to hoping...