Monthly Archives: September 2019

Gideon’s Make A Wish Denial

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.

Gideon had a good day

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

Palliative Care for Gideon

Last Monday evening, Laynie had her first volleyball practice of the season. Kevin offered to stay home with our other kids, but I thought it would be great for us all to go and watch her practice. It was not my best idea. Nya was crawling on the floor, Josiah was climbing on everything. We washed little hands and headed home to bathe the kids, with the hope they wouldn’t get sick.

All of our best efforts were useless. Tuesday morning, Nya was puking by 9 am. After quarantining her and cleaning her vomit all day, I prayed that the others would be okay. Unfortunately, Laynie woke up at 4 am Wednesday morning puking with the same stomach bug. And by Wednesday evening, Gideon began puking too. It was only a matter of time before me and my mother were also sick.

I’ve been a parent for almost 10 years now. And I can honestly say, I cleaned more puke last week than in all my 10 years combined. Thank goodness my sister in law and mom were there to help me while Kevin was at work! As a family, we have never been hit with an illness like that. (Kevin and Josiah were fine. Apparently their stomachs are savage.)

Thankfully it was a 24 hour bug for the majority of us. Unfortunately, for Gideon, the puking and diarrhea lasted for 3 days straight. He couldn’t keep anything down. It whooped him and us. We knew his recovery wasn’t going to be easy. When you factor in his degenerative genetic disorder, the recovery process is even more complicated.

All the kids have been loving Gideon this past week. It’s been heart warming to see.

So here is the point of me telling you this story. Gideon has not bounced back as we had hoped. When he was hospitalized back in May of 2018, we met with a palliative care team, just to have people in place, should things go south for Gideon. Fast forward to today, we called the team together and now have palliative care for Gideon.

Gideon will be receiving extra care in the home to help him (hopefully) get over this hump. We have tons of support in place but would appreciate your prayers during this time as we wait to see what Gideon will do.

Today was the first good day since he got sick. Gideon’s intake was good, he pooped (finally) and we even got some smiles and giggles out of him! But even with all those positive changes, it’s looking like his little body has just begun to wear out. Peroxisomal disorders come with a host of other problems and it just all sucks.

So the big question-

Could he pull through? He has before. And we hope he does again. But our goal for Gideon has always been quality of years over quantity of years. Should this be his last battle, Kevin and I feel confident that we have done everything possible to give him a joy filled life in spite of his circumstances.

So now we wait.

For our family, we also trust in the Lord. Psalm 139:16 reminds us that all our days were ordained before any of them came to be. So we trust in God’s timing while we wait.

Finally, smiles and giggles before bed tonight.