The Celebration

If you missed the previous post click And Then He Got Worse

It was almost surreal.

I found myself stopping and staring at Keven multiple times throughout the day making sure that this was real life. He was still with us. It truly was a miracle. We were so blessed to still have Keven with us. 

Just a week after we thought we were going to lose him, we instead got to celebrate Keven’s 4th Birthday. It had to be huge.

I was waiting on a Paw Patrol feeding pump backpack to come in the mail for him, so I decided to use that as his theme. One of our stateside staff was coming down the day before his birthday so I had things shipped to her house so she could bring them down with her. Scooby Snacks, Cocoa Pebbles, decorations, Paw Patrol party hats, and new Paw Patrol books. Here, I made puppy chow from corn flakes, a giant dog bone shaped cornflake rice crispy treat, and gathered up all of the shaving cream I had. It was going to be big.

On the day of the party we decorated, had all of the “dog treats” out for eating, sang, opened gifts, and prayed through tears of joy for our miracle kid. After that was done, I sprayed shaving cream all over the smooth ground and we went “ice skating” or what may be more accurately described as bathing in shaving cream. 

Keven didn’t eat food and he couldn’t hear his prayers or his songs, but I wanted to do something he could fully experience. He wasn’t super impressed with the shaving cream, but tolerated it until he touched his face and some got in his eyes. 

Nannies commented about how his party was better than other kids’ parties and they were proud of that fact. They knew how close we were to losing that little man. Getting to celebrate his last birthday with a big bang was such a blessing. 

As the next couple weeks passed I still found myself staring at him and touching him to be sure it was real life. 

November 9th, about a month after his last episode, his breathing worsened again. No one really wanted to talk about it after our surprise from the last time, but we all knew this could very well be the end. 

A week came and went. He still needed oxygen to breath. He wasn’t getting better after a week this time. Would he get better at all? How long would it take him to decide? 

That month was terrible. I processed a lot of the feelings during his last dramatic episode, but the waiting and the not knowing was heart wrenching each day. Every night I kissed him goodnight and didn’t know if I would see him alive again. Many nights I laid sleepless in my bed checking the pulse ox every time he had a dramatic breath. 

There were so many times I called or messaged Carla or Courtney at all hours of the night wanting to tell them what Keven was doing at that moment so I didn’t have to experience it alone. 

In Kev’s last couple weeks of life he really struggled to breathe. He required 24/7 oxygen and if he laid down for any length of time his stats would drop. Diaper changes and sponge baths had to happen fast to keep his oxygen up. He pretty much lived in his blue Tumbleform chair, hooked up to machines, right next to my bed. In his chair or in my arms, but towards the end he didn’t even really enjoy being held. He didn’t move around much, so I never strapped him in, I felt like he was more comfortable that way. 

I wanted to hold him as much as possible, but holding him was also a struggle. The waiting sucked. My heart needed answers. I knew I couldn’t keep dealing with his super sick episodes once a month if they continued that way but I wanted him to get better and stay better.

One night Carla and Courtney came to check on us and Carla asked if we should pray for him. My response was “How?” And she replied, “We just do.” 

I had stopped praying for healing for him even though I still wanted that to happen. Some people would tell me they were praying for healing, but he was at the point that that didn’t seem like the best option. He was so sick. If he got better would he ever get all the way better? I’ve never really been in that place before. Waiting for the inevitable but so badly wanting something else for so long. It’s a strange, vulnerable place. 

We prayed that he would feel loved and be comfortable. With tears we prayed that he wouldn't have to suffer and that whatever the outcome was would happen sooner than later. 

For 30 days we lived in limbo. For 30 days Keven would be dramatic and get better. For 30 days people would ask me how he was doing and I wouldn’t know how to respond because of how up and down he was. For 30 days I watched him decline. For 30 days I feared every moment of every day that Keven would take his last breath. 

To read the next blog in this series click The End

*Children of the Promise has given explicit permission for the posting of photos on this site. Photos taken of children in the care of Children of the Promise are not to be posted publicly without explicit permission given by Children of the Promise.