Category Archives: Special needs children

A Wish with Wings

Faith & Hope, Parenting, Special needs children, ,

I have never felt more helpless than I did this past September, when our son Gideon was placed on hospice care. Since Gideon was 7 months old, we have known that his life expectancy would be short. However, that did not seem to change the shock of it all when he suddenly fell so ill.

End of life planning for a child is something no parent should every have to do. During his time on hospice, I called a funeral home to begin preparations should that time arise. We spoke with our pastor, planned music, gathered photos, etc.. And then something amazing happened. Gideon pulled through it all. On November 7th, he was discharged from hospice care. And just like that, two of the worst months of my life were over. The weight on my heart was lifted and I could breath again.

Maybe that is why I’m feeling extra emotional this Christmas. You see the truth is, when he was originally diagnosed with PBD, we never thought we would get even one Christmas with him. But as I reflect on these past six (almost 7) years, I’m reminded of an obvious and important truth.

None of us are promised tomorrow.

Any one of my kids could be taken from this life in an instant, not just Gideon. My able bodied children could become disabled in the blink of an eye. There are no guarantees of health and prosperity in this world.

That’s why I love the Christmas story. God knew before the foundation of the world how it would all come to pass. Jesus’s birth, offering the hope of our salvation reminds me that even when things seem to be out of our control, they are not out of His control. God’s working all things for our good and His glory.

And I can rest in that truth.

After my last post, a friend reached out and suggested some other organizations, similar to Make-a-Wish. A Texas organization called A Wish with Wings, has been granting wishes for kids with life threatening medical conditions since 1982. And although they don’t grant swim spas, in two short months they were able to give our boy a hot tub!! And the best part is that they got it done 3 days before Christmas!!

We would like to thank A Wish with Wings, Aries Spas of Rockwall, and Gary Winkles with Electrical Specialists of America for making Gideon’s wish a reality. We are eternally grateful for the many memories we will make with him as a family in these waters.

Gideon’s Make A Wish Denial

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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…

St. Lawrence 20' Dual Temperature Swim Spa

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.

Gideon had a good day

Faith & Hope, Parenting, Special needs children, , , ,

Yesterday, Gideon had a good day.

His intake increased and he even fed himself a Pediasure bottle! He also pooped four times yesterday! TMI? I don’t care. Also he was awake more yesterday than he’s been in a long time. It is a beautiful thing to see those bright blue eyes shine.

We will see the hospice nurse sometime today and I can’t wait to tell her how much better he’s doing. Nurse Kathy is the best. She’s the one who introduced us to my new favorite word for a diaper blowout. Are you ready for this?

Poonami

(poo+tsunami =poonami)

You’re welcome.

Anyways, as I was looking over my calendar this week, it hit me. We still have a lot going on as a family. Life doesn’t just stop because someone we love is on hospice. Laynie will still go to her sewing class and volleyball. She and Josiah will still do school work. Josiah still needs to work on his potty training (Jesus help me!). Nya will still go to her 15 month check up. And Gideon still has all his needs plus a few extras now.

My point in rambling our schedule, is this: We are going to keep doing life, and we’re going to do hospice too. Life is not going to look the same as it did before; but we’re going to do it like we always have. We’re going to love each other fiercely, we’re going to make time & allowances for big emotions, and we are going to walk this out (for better or for worse) in a way that glorifies our merciful Creator.

God has been extremely gracious, faithful and sustaining to us over the years. That won’t change for us. Even if the healing (this side of Heaven) doesn’t come.

“…shall we accept only good from God, but never adversity?..” Job 2:10