The road less traveled

Rare experiences and better perspectives

I’ll let you in on a little secret.

Asa’s superpower

Asa has a mini-superpower courtesy of Phelan-McDermid Syndrome: he is nearly impervious to pain. When he cries, you know he’s really hurting.

Like many superpowers, there is a downside. Asa can’t tell us if he feels discomfort. Severe intellectual disability limits his non-verbal communication in devastating ways. Sign language is not an option.

Why Asa matters

Do not misperceive the intent of this journey. I am not trying to prove our tragedy outranks all others. I do believe that our experience is rare and sometimes misunderstood, ignored or unknown. I want to make it very clear to you what it may be like to be Asa and to care for him. His situation has public policy and other implications for the kind of society we want to live in.

Let me share a little more of his story. Asa was born on July 6, 2015. Once we arrived at the hospital, everything went very fast. So fast that Asa’s mom, Talya, birthed him without an epidural. Everything to me seemed just fine. The mother who went from no contractions to delivery of a 10-pound baby in about two hours without pain medication had a slightly different perspective, but she eventually agreed with me. We even thought it was an improved experience over the birth of the other two.

A year later we knew something wasn’t quite right. My next post will detail Talya’s exhaustive search for and success in finding answers regarding Asa’s global developmental delays. It’s the story of a superwoman who faces one unnecessary challenge after another from an unrelenting health care bureaucracy.

But first, some perspective.

The missing kids in the classroom

Ten days after Asa was born, a couple we know well had a sweet little baby girl. Our first-born children had only a 10-month age gap and now their second and our third were just 10 days apart. I imagined as toddlers they would play and fight. Grow and learn. Be together at their birthday parties. Become good friends and maybe even more.

Two newborns meant little time and little sleep for both families so we only met a couple of times in those first few months. That’s okay, I thought. We’ll have plenty of time later. I couldn’t quite remember if I ever asked to hold her. No big deal. I’ll do it later.

One day in November, the father of that baby girl born barely 100 days before rocked her to sleep on his chest. She never woke up.

I called him while on a work trip in Bellingham, Washington. In a state of shock, I remember saying all the wrong things and asking all the wrong questions. He has yet to call me out on that.

The parents of that sweet baby never seemed to waver in their love for each other. A few years later they had a boy who is now three-years-old, healthy and quite charming. His parents appear solid as a rock. They continue to show me how tragedy can be handled with amazing grace. Twice a year we meet them, their families and other friends at her gravesite in memory of her birthday and the day she passed away.

We can’t forget what we’ve lost though. There will be no birthday parties. No fighting. No playing.

Talya told me that the mother of that sweet little baby girl said it is incredibly hard for her to see a classroom of children around the age her daughter should be.

Asa will not be in any classes either. Toys are rarely touched. Reading seems unlikely. He will have no friendships. There will be no wedding and no children.

But we do have more of Asa than our friends have of their little one. We are grateful for him and we mourn for them.

Now when I see a class of kids around their age, I think of that sweet baby girl and my boy Asa and all the others that are not there and never will be.

New reader? See first post