I was a hospice nurse for years. I think I will always be one at heart. Maybe one day when all of my kids are out of the home and I have the time to dedicate myself to it, I will be again. Hospice nursing was my best nursing. I was consumed with it, I wanted to be there for every moment for my patients and their families. I know, that sounds crazy to say out loud. But it taught me so much, about life, and importance. About God, and His grace. Death is as beautiful as birth if it’s allowed to be. To be with these people in their most precious moments. It’s a gift. To be able to be present. To hold a hand. To listen to stories of a life. I loved hospice nursing with my whole heart. I can walk into a stranger’s room to this day and tell you how close they are to dying. I know the symptoms. I know the process. I can see it months in advance. I saw it with Ky before everyone else did. I saw him smile a little less. I saw him sleep a little more. I saw him stop tolerating all of his sisters at once. I saw tiny drops in numbers. Nothing that alarmed anyone, but I saw it.
In October it became more clear. He stopped tolerating a lot of things. We tried two more outings. Halloween and Farmers Day. I needed him to experience those with us. His tolerance was not there. Farmers day we got stuck in traffic trying to get back home and Matthew and I both were in a panic because he just was so off. When we got home, we settled him. Matthew said, he’s done going. That’s it. And I knew then, that he saw it too. On Thanksgiving we hosted. We had to keep his room closed and quiet. Matthew stood guard. His heart heavy. The next day I called the doctor. I explained the last few months, and I told her it was time. We were ready for hospice. Thankfully she had my same experience with hospice and she knew I wasn’t crazy. She was such a comfort to me that day.
Even when they came out, they didn’t see it. They see medically complex kids all of the time. And they bounce back, believe me; they are the most resilient humans to ever live these medical kiddos. And Ky has been too, for so long. SO many times I have just known, the RSV, the Covid, the Flu, the pneumonia, was going to be it, that was going to be the end. Only for him to wake up days later right back to his bubbly happy little self. This time was different. I kept telling them that. We knew something wasn’t wrong. We knew this was him saying goodbye.
A couple weeks into December he stopped tolerating his feedings, then he stopped tolerating water, and Pedialyte. Again, we knew.
The week of Christmas it was evident our time was drawing near. He was so tired. And he worked so hard to be alert and with us. We made it to his birthday a week later. We celebrated quietly. All of his siblings and us. We were selfish. We wanted to have him all to ourselves.
The next few days were a blur. But I want to share some of how GOOD God was to us. There were so many God winks and moments over the next five days. So many prayers said, so many answered. But the vent prayer, that one was so big to us.
Our anniversary is the same day as Ky’s birthday. I had bought Matthew and I a spot in a glass blowing class in Pittsboro for Christmas for the day before anniversary and his birthday. I had lined up Kinnley, Tate and Parker to help watch kiddos. We almost didn’t go. I knew Ky was bad, and I was terrified to leave him. The kids convinced us to go. On the way we had an hour and a half of uninterrupted time to talk. We said what we had both been feeling for weeks. We knew the end was near. We talked about everything from how we wanted that to go, to how we would handle the kids, afterwards, anything and everything. We were able to lay it all out, out loud. We cried all the way there. We did the class and loved it. And we talked and cried all the way back. I know now God knew we needed that time to sort it all out and prepare ourselves for what was to come. And we knew it was coming fast.
That night Ky started having pain, and he cried. He never cries. I had to call the on call hospice number. The medical director called me back. We talked at length about everything. She saw what I saw. She coached me through being a mom and balancing that with the nurse in me. I asked her about his vent. I had never done pediatric hospice as a nurse, and I most definitely never had someone die on a vent. She said “you will come to a point where you decide to take him off that vent. You will know.” I cried so hard after that call. Ky didn’t really need his vent before the last weeks. It helped him with pressure but he breathed on his own. I could see in those last days that it was breathing for him. I knew what taking him off meant. I told Matthew I didn’t want to be the one to decide that. Hospice is supposed to be peaceful. It’s supposed to be comfortable. It’s not supposed to be us deciding to stop the thing that makes him breathe. I remember rocking him that night and praying about that vent over and over. How would I make myself take him off of that.
The night before Ky died, Matthew and I were standing over his bed. He had not been awake in a little over two days. He had not eaten in over two weeks. He had not urinated in days. His little face was swollen, and his eyes, actual eyes were starting to swell. Matthew said, Jennifer, if this were you, I would never let you lay here like this. I knew what that doctor meant in that moment. It was time. I told Matthew when the hospice nurse came that next day, we would talk to her and take him off the vent. I cried all night at the thoughts of removing that vent. I held him and we rocked in his rocking chair and I just kept crying to God, knowing it was the right thing but in anguish over doing it. I still didn’t want to do it, even though I knew it was time. The next morning Ky’s nurse came in. We told her about the night before. I told her I wanted to shower before the hospice nurse came, Matthew took the two little girls to school. I told her I wanted to bathe Ky, but Matthew wouldn’t let me during the night because bath time was his and her thing. So, I jumped in the shower and she bathed him. During my shower Dillon came and got me. Again, I knew.
I walked in and his little alarms were alarming, all of them. Everything was bottoming out. And in that moment, there was no decision to make. I pulled them all off of him. I picked him up and we went to our rocking chair. I turned on our worship playlist, and I sang. Buffy had stopped by, came in while I was in the shower, I didn’t know she was coming. God knew she was though. She started making calls.
Over the next hour, Ky would keep breathing. Peacefully, slowly, until he wouldn’t anymore.
It was almost out of body now that I write it down. The room kept filling. His sisters. My sisters. His Grandma and Meme. His nurse and her daughter. Our Pastor. My best friend. Then Karen and Quint. And we sang. We all sang. We sang our beautiful boy to the entrance of Heaven. Heaven came right down to earth. We watched it. In our little house. The Holy Spirit was so tangible. And our baby’s eyes lit up, they weren’t swollen anymore, and his little smile cracked for the first time in days. And he stopped breathing. God spared us. We didn’t have to make any hard decisions. We didn’t have to hear a struggle to breathe. We didn’t listen to the familiar death rattle for hours. We just watched the beautiful boy we loved stop existing here in this broken little body, and we knew he immediately ran to the arms of Jesus.
What I didn’t know, was how much it would hurt after. I have dealt with death for so many years. Even with family. While I love and miss them, I have never struggled with it.
It’s been a month. A month since that day, and while it seems like yesterday, it seems like forever ago all at once. I miss him with every fiber of my being. It’s like a heavy cloak I can’t take off. I don’t have a thought that he is not in the back of. I miss kissing his sweet little face. I miss going in his room. I miss pulling up meds and folding a million loads of his laundry with Matthew in the evenings. I miss hearing the girls play with him. I miss watching Matthew flit around his room cleaning and organizing and saying- what’s he got up next to do? I miss his nurse being here every morning. I miss every single thing about our lives before. I don’t know how to move forward. I stare at his empty bed and sit beside it. I need to take it down. But the thought of it gone seems so final.
I also didn’t know that the foster care and adoption world would get one final jab. That the body that we loved with all we had would go back to the family it was born into. That we would be left empty handed. I should have known. It’s the literal definition of the foster care world. Foster parents love with everything they have to give, and they are the ones that matter the least in the story. And truthfully, I am almost always okay with that, as long as the best interest of a child is at heart. We did not foster or adopt for our glory, we did it for His glory. Because James 1:27 says so. We wanted to make an eternal difference here in the lives of those God placed in our care. My faith tells me that it’s just an earthly body, and I know that. I know where he is. I know that I will see him again. And I keep praying that those ashes bring that eternal glory to that family, and that they are healed, that his little life keeps on affecting others for God’s glory. I don’t want to pray that. But I do. The human side of me though, is so angry about it. And I wanna scream about it. I wanna spill all that anger somewhere. There is no where to spill it, so it stays here, and I stay quiet, just sitting in it, trying every day to give it to God, but I can’t seem to let it go.
In the same breath I am so so so grateful that he is healed. That he is breathing, running, singing, and dancing.
Talk about complicated grief!
At the end of the day, I am so thankful for what we knew. We were given such grace and mercy that we didn’t deserve. We cherished the last few months. Every moment. Every memory. I am thankful that all those years ago I learned to be a hospice nurse. I am thankful for the gift of time. Thankful for five short years with the sweetest boy around. And I will go to my grave being thankful that I didn’t have to make a decision about that vent. I have had a lot of prayers that I watched God personally answer exactly how I needed him to over the years. But nothing has ever, and probably ever will be as personal to me as the gift He gave me of not having to make that decision. He loves us so much. And even though sin and destruction are all around us, He wins in the end. He personally knows and loves His children, and He will show you that if you open yourself to Him.
Life's a Garden, Dig It 