Category Archives: Parenting

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 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

Palliative Care for Gideon

Faith & Hope, Parenting, Special needs children,

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.