Some Families Run a Never-Ending Race

We had a fix.

That is what I kept thinking as I walked the halls of Children’s Hospital and saw so many kids whose conditions are permanent. Kids who will never walk again, or live their lives on ventilators, or spend only a few more months with us before their short lives are snuffed out by a terminal disease.

I have great empathy for their parents. I’m in their stadium, but not in their race. I ran a sprint. These parents are running a marathon that never ends.

I don’t know if I have the strength to put on their shoes.

If they had my option – to gamble on a risky surgery that could provide a permanent “fix” for their child – they’d take it with tears of joy in their eyes.

Life has been a struggle for Brooke and I the past few months. In and out of the hospital. Relying on others. Unable to settle into the routine of normal family life. Huge hospital bills. Frustration over lack of progress.

Most of all, we’ve hated watching our little boy struggle. We see friends with happy babies reaching milestones Tyson should be achieving, yet he is far behind.

But we had a fix. We knew this surgery was coming and we knew, if successful, it would put us on a path to normalcy.

We are not 100 percent sure we are there, but we are in a better place than we were a week or two ago.

That is not the case for many of the parents I saw walking the halls of Cincinnati Children’s Hospital Medical Center. They don’t have a fix. Their life will never get back to normal.

I walked into the lobby of the cardiology unit the other day and saw a priest comforting a family of seven. I don’t know what happened, but, of course, I do.

When I walked to the parking garage, even at 11 p.m. at night, I saw people sitting in their cars or even on their open truck beds, eating, drinking, listening to music. Who hangs out in parking garages? Family members of children who have come to the hospital from outside of Cincinnati – Morgantown, W. Va., or Evansville, Ind., or Frankfort, Ky. People who need to be here for their child, but don’t have a local option or the cash to spring for a place to stay. They live out of their child’s hospital room and that few minutes they have in the parking garage is a respite from the challenges of loving and caring for a struggling child.

A few minutes of solace.

My wife sees this all the time. She is a special education teacher who takes care of children with disabilities. She’s had children in wheel chairs, children on ventilators, children who don’t speak or hear or comprehend. She’s had children whose problems are simply insurmountable, yet their parents chug along each and every day, trying to do their best at establishing a normal routine.

These parents are super heroes.  

I’ve never been an activist. As a journalist, I tried to use my skill as a writer to shed light or right wrongs or even change a small corner of the world. Up until recently, I worked in a field designed to help people – my little way of doing something to make a difference.

But I’ve never been big on volunteering or joining causes or doing this walk or that fundraiser. Group activities like that are just not in my nature, and I doubt that will change.

But seeing these children and their parents breaks my heart. Every day for them is Groundhog Day, the same bad news over and over.

I don’t know how they do it. I feel like I should do something to help.

Many people have rallied to our side during our ordeal with Tyson. People from all over the country – even the world – have voiced their support.

Thank you. Every prayer and good thought you have sent our way has helped. My wife and I are amazed at the support we have received and we wish we could throw a party for all of you.

But our sprint is hopefully ending. We had a fix. If we are lucky, we are moving on to a new phase in our life.

If I could ask one thing of those who are reading this, it would be to visit the Children’s Hospital nearest you. Ask how you might help. Or reach out to that family you know who struggles every day taking care of a child with a disability or terminal disease. Offer to give them a break. Make them a dinner. Buy them a gift card.

Say a thank you to the heroes who work at these places and take care of these children every day. Emotionally, it has to be tough.

I’m much more aware of this now. I don’t think I will ever be an activist, but I do think I will pick and choose the spots where I help. The Ronald McDonald House will go on the list of charities I annually cut checks to. So will Cincinnati Children’s.

I need to do more to help, and, while I don’t want to be preachy or melodramatic, if you have a decent life, so do you.

Because some families will never have a fix.