During Dale Jr’s most recent chemo treatment, he ended up back in the hospital. He got so dehydrated from vomiting after the second of the four days of infusions that he had to be admitted. So almost six months to the day after we left that inpatient pediatric oncology unit hoping to never have to go back, there we were again for another four-day stay.
He remembers everything about the last two times we were there, particularly the location of all the play areas. He was so weak the first couple of days that he could barely move, but he wanted so desperately to go up to the fancy playroom two floors above the oncology unit.
There was no way he could walk the distance. He couldn’t even walk much past the door of his room. So I found a wagon and loaded him in with his stuffed bird doll and a blanket. You could tell he felt awful, but he wanted to go so much that the medical staff suggested we at least try. I took the wagon handle in my left hand and the IV pole in my right, and I dragged it all behind me toward the elevators.
About halfway there, I was almost struck down with a vision of what I had seen in this place six months before.
Outside his room when he was first diagnosed in March, I saw a dad pulling a little girl in a wagon. She was wrapped in blankets, too weak to move. He dragged the wagon handle in his left hand, the IV pole in his right. They made laps of the oncology unit. As I watched them, I had this haunting feeling that what I was seeing was a prophecy of our future. I never imagined that it would literally come true.
I became that dad I wrote about. I wanted to fall to my knees, but I knew I couldn’t. We have to keep a brave front for him.
We made it to the floor the playroom is on even with my awkward ‘driving’ skills. Since the children’s hospital is located on a major college campus, a lot of college students volunteer there. I was rescued by two of them. One offered to push the IV pole the remaining few hundred feet to the play area while I pulled the wagon.
If you ever wonder what you can do for someone, carry a little piece of their burden for a bit by doing something practical. It doesn’t need to be much or for long. Just pulling the IV pole along for a couple of minutes matters.
This was the big playroom for the entire inpatient part of the children’s hospital. Children with cancer, severe burns, injuries from accidents or traumas, and much more all mingle together with volunteers. It’s like the center of the unfairness universe. But we make the best of it. The kids with cancer tend to get the most sympathetic looks and quiet words. Everyone here knows some of them won’t survive.
The kids play, and for a little while we forget what all is going on. He lasted about fifteen minutes until I had to take him back to his room. He slept for three hours. It was all heartbreaking. We were living on the other side of the prophecy. If I could have rammed that IV pole up cancer’s ass, I would have.
While he slept and I drank bad coffee from the parents’ pantry and ate from a stack of individual cups of chocolate ice cream, I tried to think about anything to be grateful about in all this. It turned out to be not all that hard really.
It’s the people who will walk to the edges of worlds to care for our children. These nurses and doctors walk toward the center of other people’s hell and do their best to help, to heal, to give hope.
The families find a bit of comfort in each other even if we’re often too busy attending to our own children to talk much. We are like strangers huddled under a shelter in a terrible storm.
We have all been offered platitudes by well-meaning people to explain why we are here in this place with our children. Those people will never really understand what it means to be here. They just need to make sense of it for themselves and maybe for us, too, in an attempt to avoid the feelings of terror we feel.
But what kind of divine plan can have children screaming as the chemicals burn a hole in their chests? What kind of plan can have parents’ hearts lying shattered on the hospital floors? What kind of plan decides which little ones live and which die?
The solace I find is that people care for us and help us, for whatever reason. Maybe it’s because of their faith. Maybe it’s because it’s simply who they are. Maybe it’s a combination of these and so much more. I simply don’t know.
The kids in the oncology clinic try so hard to carry the banner of bravery left for them by all the courageous souls with cancer who went before them. They, too, do not know how to quit. They inspire us. They teach us what is most sacred in life. They teach us that we don’t have time for all the petty things in life. Our time here is just too precious.
And somehow all this care and courage turns everything into a certain ragged grace that comes out in between the cracks of chaos and hope. It calls us on to follow the footsteps of those who have been out here before us. We are not alone, even if few will ever take the path we are on.
Is any of this fair? It almost doesn’t matter whether it is or not. We can curse the challenges and heartaches in our lives, but it does little to change them. Lately, I feel a bit less angry. I’m not sure why. I guess I realized it wasn’t making any difference except to harm me and others.
We are loved. We are pitied. We are embraced. We are sometimes just on our own. We try our best. We win some days and lose others. We hope in a good future because the alternative is too terrible.
Perhaps people see us as a symbol of how fragile life can be. Perhaps those who live fairly straightforward lives see ours as a rollercoaster precariously balanced on the edges of gravity. Some days are very hard. Some are pretty average. Others are extraordinarily amazing beyond words. But it’s quite obvious that the lives of others are not much at all like our own.
It’s hard to see this as a journey anymore. It’s neither a marathon nor a sprint. We live outside of time. It’s just today now.
We are exhausted, constantly worried about finances, short with each other, and desperately hoping for the days beyond all these challenges. We joke that autism is about eleventh on our list of things to be anxious about right now. We do know that ourselves of two years ago wouldn’t recognize who we have become.
We take heart in how much both our kids inspire others. They have gone through more challenges than most children end up facing their entire lives. So many root for them and want to help. They’ve pulled the IV pole for us whenever they could. I could never put into words what all this means to us.
My hope is that you find people like this in your own lives. We all need them. We aren’t meant to do this alone.