Before I tell you about Gideon’s Make a Wish Denial, let me first tell you about what Gideon has been granted.
If you’ve followed our family’s journey over the past six years, then the following information will not be new to you.
Gideon has been granted a life that we never could have imagined. At the time of his diagnosis, we were told we had less than a year with our baby boy. We never dreamed we would get the gift of more time, but we did. But with that gift of time, we were also told of the struggles we would most likely endure regarding his health and our finances. We were told to expect multiple hospitalizations per year. We were told to expect multiple medications and procedures that our son would require. We were also told that our medical debt would be more than we could ever imagine.
However, over the past six years, all those things we were warned about never came to fruition. Praise God, Gideon has had two hospital stays in six years; one pharmaceutical medication that he only needs when he’s sick. And Gideon has no medical debt.
The blessings around our story are too numerous to count. I could go on to tell you about equipment that Gideon has been given, and the Family Camps that have been fully funded. And how someone anonymously gave us a new wheelchair accessible van in 2015. There are so, so many things we have to be thankful for.
Gideon has been granted so much over the past six years and we could not feel more grateful and more blessed when we look back over the course of his life.
So as I tell you about Gideon’s Make a Wish denial, I want you to know that even though I’m extremely sad and disappointed, we really can’t complain in light of all the blessings we’ve been given.
Over the summer Gideon had a respiratory infection that had us worried. So towards the end of summer I filled out the paper work for Make a Wish. I received a call and was told that because his life wasn’t currently hanging in the balance that it would take some time for them to get to his wish. The last week of August Gideon got sick and was placed on hospice September 3rd. His hospice nursed made a call and we had wish granters in our house on Friday the 13th.
Ever since Gideon was little, we knew what our Make a Wish would be for him. Since he’s blind and deaf, the one thing that brings him the most satisfaction is being in the water. We told the wish granters we wanted a swim spa so he could use it all year round. They told us to find the model we wanted and to ask for the biggest and best. So that’s what we did.
We sent them paperwork for this massive beast with all the lights and sounds…
We never expected to actually get one this big. From our conversation, I assumed that we should ask for the biggest and best because Make A Wish would negotiate it down to one that was smaller?? I’m not really sure what I was expecting. Regardless, the following Monday, the granters responded with this message.
Here’s why I’m feeling so sad. Gideon missed being granted a swim spa, by 17 days!! It’s not like Make A Wish stopped granting swim spas last year. It’s as of September 1, 2019. My heart is broken because we’ve talked about this for years. We waited to do Make A Wish because we lived in an apartment for two and half years, while we saved for our forever home. Now that we are here, we are 17 days too late. And now it looks like it won’t even matter.
Gideon was doing really well over the past week. He was back to eating and drinking and gaining weight. He had been playing and doing his physical therapy. We were hopeful he might get kicked off hospice at some point (as some kids thankfully do). Unfortunately, he got sick Thursday night and we had to have a hospice nurse come out at 3 am on Friday to stop the vomiting. I’m not sure what to make of it this time. Hospice is a roller coaster. One I hope Gideon doesn’t have to ride for too long.
All that said, Gideon’s Make a Wish denial is not that big of a deal. I just regret not doing it sooner. For a kid who can’t travel much and gets sick easily, having access to warm water (with jets and lights) at home sure did sound like one more amazing blessing.
