I rolled out of bed and then was off to an early appointment with the dentist. Upon arriving at 10 a.m., I received the following text:
“Looks like we’ll be transferring to a different hospital tomorrow. If you want to visit, come by today any time you like. No pressure to come at all.”
I left the dentist and arrived at the children’s hospital and the PICU around 1:30 p.m. There I saw the little boy reading a book with his grandmother. He was tired and uncomfortable with IVs, cables, and wires sticking out everywhere, but he was smiling and talkative. Looking at him, you wouldn’t be able to tell this little four year old had a golf ball sized tumor pressing against his brain stem. He’s had sleep apnea, asthma, and seemingly a thousand other problems with his tiny body. His parents have been with him in and out of one doctor’s office after another, all to find out what’s going on. He’s smaller than other kids his age, he struggles to breathe, especially at night, and doesn’t get the necessary oxygen to his brain. When he does anything strenuous, like running and playing, he gets out of breath and is on the verge of passing out. Needless to say, a little boy of four shouldn’t be facing the challenges he’s facing and no parent should have to helplessly watch as their son does.
Sadly, this is far more common that I care to think about.
So there we sat, mother, father and I just talking and sharing heartache. Visitors came and left and dropped off gifts and gave their love. It was so amazing to see the affection and care that everyone had for this family. God wanted to make sure that they clearly knew they were not alone and not forgotten. The hours slipped by, and it was time to wind the evening down. Mom had stayed the night before, so tonight was Dad’s turn. She left to feed and spend some much needed time with little baby Sister. As she left the room for a restless night at home the words came quietly out of his mouth, “I miss my sister.”
My heart tore in two. He had said it nearly a dozen times and each time it nearly knocked my knees out from under me. It was as if the air in the room was sucked out and everything stopped. Sadness overcame all of us. His Dad touched his head and brushed the hair back, “I know, Bug.” Dad was strong for him, but inside, Dad’s world was falling apart at the seams.
It wasn’t long before he asked, “When are we going home?” As any little kid, he was done with this strange bed and gloomy room. He missed his toys, his living room, his couch, his yard, and everything that was his home. This place was claustrophobic, stressful, and depressing.
Dad, once again, was the bearer of bad news, “It’ll be a while.”
Today is Saturday. Monday they travel across the state to another hospital for the surgery most likely to take place on Thursday. It’ll be a week at the absolute earliest before he sees his home again.
They came to the hospital on Wednesday for a quick MRI and then were going to head back home. After the test, the doctor came to them and asked and said those horrid words that send panic through every parent that hears them, “Would you like to sit down?” This was supposed to be a simple test. Clearly something was terribly wrong. They were blindsided and left to desperately pick their tattered emotions off the floor. A brain tumor.
It was 6:30 now and Dad hadn’t eaten. I didn’t feel hungry either, but now that Mom had gone home, and the grandparents had arrived to sit with him for a few a minutes, we went out to grab a bite to eat. It was an act of sustainment rather than physical prompting. He and I both knew that we’d feel better with some food in our stomachs. It’s a strange thing I’ve had to come to terms with several times in my life. It’s when hunger leaves and eating becomes a scheduled event. If you don’t set aside time, you’ll forget. The body physically manifests the heartache and helplessness and hunger vanishes. If you don’t eat though, the fatigue will become greater and cognitive ability will decease rapidly. Emotions will become harder to handle, and you’ll find yourself becoming more volatile and on edge.
So we begrudgingly ate.
7:30 we arrived back in the PICU and relieved the grandparents. A few rounds of Go-Fish and Bingo later, everyone had left. It was bed time. Dad picked out a book, crawled into bed with his son and read. He pointed and chuckled at the absurdity of the main character getting four different full sized dinosaurs as pets. It was a silly story. While he read, the nurse came in and gave medicine and took readings. I watched as she gazed with admiration and awe at this father and son. If nothing else was seen in all the universe but this moment, I believe it would be enough to show our Heavenly Father’s love for us. If a human can care for and love his son so much, how much more are we cared for! And as God watched this beautiful display below on that hospital bed He gathered all the angels and all of creation around and said, “Look! See my sons! See my children!” A smile split from ear to ear and filled with pride in His children He said, “They are mine. They are mine! And I delight in them.”
9 PM. With so many visitors, he had a lot of gifts, so I asked Dad if I could take some back to their house. The little room was already crowded enough. He packed me a bag and before I walked out the door he asked me to pray for them. Then, in the most revealing moment of the night, the soft spoken words of frustration and exhaustion came out, “I don’t want Travis to pray for me.”
Rejection? By no means. He’s four. He’s had people in and out all day praying for him and spending time with him. Praying means he has to sit quietly and listen. It means he can’t play with his toys. It means he can’t watch TV if he wants to. It means he can’t sleep even. Praying like we often pray is uncomfortable and difficult for children, even ones who are perfectly healthy. He was already in a place he didn’t want to be, doing things he didn’t want to do. He didn’t want to have to pray again. He just wanted to go home and be with his family. He’d had enough of all these strangers and this hospital.
My heart swelled at both the beauty of his heart and sagged at the thought of all that he was going through, “I’ll be quick”. It was. Sometime soon I hope to sit with him again and pray with him, not just for him.
Now I should clarify, I’m a pessimist. I expect the worst. I’m a firm believer in the idea of “under promise, over deliver.” I never want to lead anyone on with false hope. So rather than be disappointed, I’d rather be prepared. I think they should be prepared to lose their son. But God didn’t like that. The entire time I was there I saw images of a Jesus, sitting on the edge of that bed, playing games, laughing, and carrying on with great joy. I saw peace and hope. When I prayed, I expected to see God weeping with us, but instead I saw the face of father who had just given his son a huge birthday present. With big eyes and a gleaming smile, he was watching as his son tore open the wrapping paper. It was with expected joy as if a surprise was in store that was going to blow everyone’s mind. God was going to pull off something none of us were ready for. It was so contrasted to my usual demeanor that it was jarring, and I decided not to say anything. I needed to sit and ponder it. So off I drove.
“Father, why did you not weep with us? You’ve wept so often with me when I sat curled in a ball on the bedroom floor. You’ve held me and said, ‘I know’, just like his dad did. You weren’t going to fix the hurt like I wanted, but you understood it and you comforted me. But why didn’t you do that in there?”
“Because with you, I wept over heartache directly caused by sin and rebellion.”
“But when Lazarus died, it broke your heart! When Jesus saw the heartache and the hurt of the people, though he was going to fix it, he still hurt with them and wept with them. Why then did you not weep?”
“Because, Travis, this sickness doesn’t end in death.”
I felt, once again, like the wind had been knocked out of me. God used my own biblical parallel against me and was saying loud and clear that, this was not the end, but rather another beginning. Just as he said to his disciples, “It is for the glory of God, so that the Son of God may be glorified through it.”
As I dropped off the gifts, I shared those final thoughts with Mom and said good night.
God… it’s all on you now.