What happens next changed the course of…..well…..everything.

Confession, this is not being written in real time. It took me a LONG time to find the courage to get this down in writing.

We spent mid-January settling in and getting used to Darren’s trach care. We finally celebrated Christmas, virtually that is. We opened our gifts from the kiddos on a zoom call and finally started to feel like we were on the right track. I had trach care DOWN and briefly thought “maybe respiratory care is my calling”. We had a major routine. Multiple trach cleanings a day, the suctioning, the meds, the feeding tube, keeping his sodium in check with V-8 and magnesium levels managed with crushed supplements. Managing pain was a careful dance of staggering meds so he was comfortable.

In the midst of all of this, Alex, our oldest found a house we fell in love with! I likely forgot to mention that we were living in an apartment in downtown Grand Rapids while Darren recovered. We were close to the hospital and it made sense for the time being. We closed on the house and very carefully got Darren and all of his equipment moved to our gorgeous now home, it had an inground pool! He was SO EXCITED about that pool! It was 1.22.21 when we moved in. 6 insanely short days later, Darren’s vitals were not exactly cooperating. We had an appointment on 1.28.22 for him to get his chemo, so we would figure it out there. Off to the oncology office.

They were concerned as well, but agreed to give him his Keytruda infusion. But immediately following the infusion they sent us to the ED. We knew what that meant. He was admitted.

The days that followed felt a bit like an episode of House. He was experiencing unexplained fevers and infection prevention became a big part of his care team. They wanted to know what he ate, where he lived as a child, does he garden, drink well water, have any exotic pets, you name it, they asked about it.

When I look back at this time, it seems so much worse than it did when I was living it. Doctors and nurses “hinted” that things were not going well. I did not see it. Under no circumstance would I except anything but my husband coming home with me to get ready for his next infusion. The life saving infusion. He was going to get better!

I was wrong. On Sunday, February 7, 2021, we lost the most incredible gift of a man. My life and love. The man who gave me a life I never thought I deserved, let alone could ever imagine having.

It was like being in a theater for the last 25 years and watching the GREATEST show I have ever seen. But instead of “happily ever after”, the theater just went dark. The show wasn’t over, how could it have gone dark?

We will all find out light again. It’s what he would have wanted!

Much Love,

Carie