When I was 23, I did volunteer work talking to people who were near the end of their lives. I was scared of other people’s pain, or at least what I perceived as being pain. I took a situation that I figured had to be painful and assumed the person felt the same. I wanted to fix it because that’s what you’re supposed to do with pain, or so I thought.
I doubt I was all that effective in my volunteer work. Most likely, I wanted to fix other people’s problems to relieve my own fears. And really how do you ‘fix’ things that either don’t need to be fixed or that simply cannot be? The truth is that 23-year-old me would be terrified of the situation my now 41-year-old me lives in, this world with so many questions and endless concerns and so few answers.
Some have said to be grateful for what all these experiences are teaching me. I would much rather our younger son not have cancer. I would rather our older son not struggle so much with the basics of everyday life. I would rather have not had constant migraines for the past two years.
The truth is that I feel powerless to do anything right now. That is one of the worst feelings you can have as a parent. There’s so much waiting – waiting to see what the cancer does next, waiting to find the right dosing for my newer medications.
Every now and then, Dale Jr. just starts sobbing. He is thoughtful and sensitive, much like I was when I was little. He gets too overwhelmed to cope with all his feelings about everything happening to him. Many years ago, I would have looked for ways to divert him from sadness or fix it somehow or tell him everything will turn out fine.
Now I know that all I can do is hold him, say “I know you are sad. I’m right here,” and be present to him in whatever way I can. I cannot deny or fix how any of us feel. This is all hard right now. The best thing we can do is ask whether we can just be OK with that for now.
When I’m at the pediatric oncology clinic, I look at all the children and parents around me. There are rip currents of pain and fear everywhere. All of us feel like we’re at the mercy of forces we can no longer control. But we are, in our own ways, present to each other. No one speaks in empty platitudes. No one denies the truth of what all is going on. We know anything else is to dishonor the paths we each must travel. We just keep moving on as best we can.
The inpatient pediatric oncology floor – our home for a total of almost two weeks now – would once have terrified me. To go there is to walk into the soul of fear. I saw parents who had become shells of themselves. Their children hadn’t been home in months. Some would never go home again.
Yet somehow in the heart of that place, grace and kindness still live. Like flowers that grow out of volcanic ash, each parent we met extended their heart to us. Their children smiled to our son and he back at them.
To varying degrees, we have all been stripped back to our core. We are given the unfiltered truth of what it means to be human. We are helpless and afraid. We are strong and our love unshaken. We fight to whatever end.
We show compassion and kindness because others have showed us the same. We are surrounded by love and support from all sides. We are exhausted and unraveling. We just try to get through the day. We appreciate what we do have. We marvel at how our kids bring out the best in others. We hold on to all that is good.
I never thought I would become that guy. That person I would have felt sorry for. That person who has no idea anymore how the supposedly normal lives of others works. That person who others look at with no idea what to say. That person whose child gets special attention because he’s fighting for his future. That person whose family others pray and cry for because they don’t believe this could all happen to someone. But that is who I am now.
Autism has become one of the easier things in our lives lately. We joke that it’s about tenth on our list of things to be concerned about. Our J-Man is doing pretty well and going through his daily routines about the same as he always has. We never know what he has picked up on, how much he understands about everything that’s happening to us. That mystery remains inscrutable for the time being. He finds solace in the routines of daily life, and he simply is. He almost seems the most oriented of our chaotic family.
But now we just want to survive all this intact and have our life together continue on, hopefully stronger and brighter than before. I have become someone I barely know. Physically I have deteriorated. Mentally and emotionally I am often someone I don’t recognize. Anxiety, chronic pain, fear, guilt, strain, powerlessness, and a laundry list of other emotions take their toll. Some of that is my own doing. In the midst of crisis, we still have it in our power to break things much more than they already are.
We will never be quite the same even when Dale Jr. finally goes into remission and, God willing, my migraines go away. Too much has happened. We will just find a new normal and come to some kind of peace with it.
We’re here together, and that’s what matters most. We have communities of support who lift us up when we can’t do that for ourselves. We’re getting by. It could be much worse. But it is hard.
Sometimes that’s just how life is for all of us. It’s OK to say it out loud. It’s OK to say things are hard. It’s OK to say you feel worried, anxious, or terrified. It’s OK to ask for help. You’re allowed to do all this just as much as we are. We’re all in our own ways in this big boat together.