Bedside Vigil

Birthday party

It was the middle of a humid April night when I reached down, touched K’s head, and felt the warmth on my hand. Yep, his fever was back. I kneeled at his bedside, and tried to figure out the right amount of Tylenol to give him at a time so he would keep it all down in between dramatic coughs. This wasn’t new; it had been going on for a couple of weeks. 

In that moment, I knew the right thing to do was to ask God to heal his little body. Everything I had ever been taught had told me to do that. Isn’t that what a good Christian is supposed to do?

But I couldn’t. 

I stayed at his bedside, fighting back tears, and jumping to dramatic conclusions. Sometimes when we have prayed for God’s healing, he made the child completely whole and took them to go live with him. I didn’t want that answer. I couldn’t put this child in God’s hands. I wanted my own outcome. I wanted to be able to hold him in my arms for days and months and years to come. I wanted to be able to see the way he smiles with his whole body again. I wanted to watch him grow and gain new strength. I wanted more time with him. 

K did not get better, he got worse. We didn’t really know what else to do for him and he was getting too dehydrated. Off to the hospital we went. It took three nurses to get an IV in his little arm. I cringed each time they poked him and then dug around to see if it worked. My poor little man. 

He spent three weeks in the hospital. Progress wasn’t really being made. Each time I went to visit and I gave him the last kiss before I turned and walked away I wondered if it would be the last time I would see him alive. It’s really hard to leave your sick child in the hands of another person. God reminded me ever so lightly each time that K was his child first and that he loved him so much more than I could. I told God I wanted K healed and would accept it if I had to say goodbye because the struggle was so hard, but I don’t think I really meant it. My selfishness was still the desire of my heart.

When he was discharged he weighed less than he had in a long time. He’s struggled with gaining weight his whole life so every little pound means a lot. He still was not healthy, but it was so good to have all of my children under one roof again. K moved into my room so I could keep a closer eye on him and so I could feed him throughout the night. 

After some experimenting with how to best re-nourish him, the winner was an NG tube and frequent servings of small amounts of specially formulated milk for malnourished children. The questioning didn’t end there. He had so much vomit that at times I wondered if he would still be breathing when I woke up. 

So many people were praying for him. He was gaining weight and finally started playing and having a little bit of a personality again. I could not contain my joy when he began smiling again and then actually belly laughed for the first time ever. In July we rejoiced because he passed his previous weight record and then in August he finally met his goal weight. God had healed him and I was thankful.

In September he took a turn for the worse. He was still throwing up a lot, so to help prevent him from aspirating he spent his days in a seated position. One Sunday night his breathing got weird, which was also not a new thing for him; but, it didn’t get better. He most likely had aspiration pneumonia. 

We started him on antibiotics, but instead of improving after 48 hours as expected, he got worse. Instead of just having oxygen to help him not have to breathe as hard, he became dependent on it. After talking it through, we decided the best course of action for the last days of his life were to stay here, where he was loved. I couldn’t let him go to a hospital where he would spend most of his day in a crib. I couldn’t imagine if I was not there when he took his last breath. I wanted him to feel loved every moment of his last days.

For seven nights he laid on his mattress on the floor of my room and I took couch cushions laid out to make a bed for myself.  Our soundtrack for the week was the beeping of machines. Sometimes I would just stare at his monitor with tears clouding my vision. When sleeping was too hard, I held him tight and cuddled him. I could not fall asleep without touching him; I would hold his hand or his little arms would wrap around mine. For seven days I passed the time holding K as much as possible while binge watching a TV show to try to get my mind off of reality for a bit. When my thoughts were too jumbled to do anything else, worship music filled the room.

I needed God. I needed him more than ever before. 

I thought I had done this before. I’ve loved children and then lost them. But this time was different. I had never known the child for this long. I had never lived in the same house and parented the child. I had never spent the previous six months nursing the child back to health. I had never had so much time to wait for the last breath. 

Song after song had new meaning. Song after song brought me into the presence of God. Song after song reminded me that God was in control. God and I talked a lot during this time. What was the purpose of the last six months? Why had he made so much progress only to end up like this? But God continually reminded me that K was always his child. He loves K more than I can imagine. Watching K suffer hurts him more than it hurts me. He gently reminded me that he loves me just as much as he loves K.

I was really ready. With every fiber in my being I prayed that God would heal little K. How many more days would he have to live hooked up to tubes and hiding out in my bedroom. This was no way for a preschooler to spend his days. This time I was sure the outcome would be what I feared so much just six months before and I had such a peace knowing it would all be okay. Hard, but okay.

But then we were all amazed.

After shaving cream "ice skating"
for his birthday

Just one week after he got sick again he started to not need the oxygen. By Sunday night he was off the oxygen completely. Now, he is doing so well. He’s gaining weight, sleeping well, and I just know his smiley self is on the verge of coming back. 

I don’t know what the purpose of this whole process was. I don’t know why K had to suffer so much. I do know that K is a fighter. He is my little hero. He has overcome so much in his short life and I can’t wait to see what else he conquers. His life is nothing short of a miracle. I find myself often staring at him, amazed that he is still with us. Sometimes it doesn’t feel like it is real life. God and I have been on a great journey throughout this process and K is a big part of that. K’s life has a great purpose, even if there was a different outcome, this statement would not change. I would do these past six months over again no matter which outcome his life had. K is worth it. He is so loved. He is so special.

I have a new trust in God and his plan for each one of my children. My children were never mine and I have no idea how much time I have with each one of them. I know beyond a shadow of a doubt that God loves each one of his children so deeply. When we are at our worst, he lays out his couch cushion bed and stays vigil at our bedside. He cuddles us, holds us, and lets the tears fall down his cheeks. When we hurt, he hurts. His desire is to make us new, make us clean, and to put us on a path much better than we could ever imagine. God makes all things work together for our good – no matter what they are. 

*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.