Stories From the Heart: The Only Way We’ve Ever Known Him

I needed to keep it together; hold back the tears, even though the struggle to do so felt like trying to stop a river from overflowing with just one bag of sand. I didn’t want to indulge my emotions in the clinical coldness of a Neurologist’s office. I preferred to grieve over my son privately, in the quiet of my own home.

My husband, Tom, stood in the corner. I sat in a chair holding our four week old son, Daniel. We listened to what the doctor had to say. But we found it hard to accept.
“I’m very concerned. His head size is below the fifth percentile on the growth chart. The effect that this will have on his development will be profound.” Tom defended our newborn, saying, “He seems alert, though, doesn’t he?”

The Neurologist replied, “It doesn’t take much brain to be a four week old.” I hated the man from that moment on. He continued, “During the first trimester the cells probably didn’t migrate to the brain the way they are supposed to. It’s a tragedy. I know how you feel. I have kids of my own. Just take him home and love him”. He knows how we feel? I didn’t think so!

Tom moved over to stand beside me, and put a hand on my shoulder. Daniel was nursing, and feeling him at my breast, seeing his quiet innocence was more than I could bear. The tears came.

“Well, at least it’s the only way we’ve ever known him,” Tom reassured. He massaged my shoulder. “It would be worse if he started out fine, and we knew him the way we know our daughter, and then he was injured in a car accident or something….” His voice trailed off. I know that neither of us felt relief in that sentiment. Personally, I was determined to prove this lunatic in the white coat wrong.

It’s been seven years since that day. After a period of wondering, we knew that the good doctor was right. That didn’t stop me from reading many books filled with miraculous stories. The right therapy program, the perfect mix of vitamins and voila! Child healed. Not so for my Daniel.

He is profoundly mentally and physically disabled for reasons that we may never understand. Those brain cells that didn’t migrate during my first trimester are indeed most likely why.

In the beginning of Daniel’s life my fear of mental retardation was so intense it left me wishing tI could die. Within a few months that faded away. For another year I wondered if he would “catch up” in development. Next, I hoped for a disability similar to Down Syndrome. At least then I could know what to expect.

Over time, I began to appreciate Daniel for exactly who he is. This happened with the support of good friends who also have profoundly disabled children. Six of us, dubbed the Molehill Mothers, precisely because we’ve learned to turn mountains into molehills, have helped me in my transformed thinking.

We met on the Internet, and each of us has a child who is non-verbal, and all of them are severely to profoundly affected by brain abnormalities. What is our mission, if there is one? I believe it’s our appreciation for the spirit of our kids, despite their disabilities, or perhaps because of them.

The smiles, the laughs, the little steps forward in development are celebrated. We don’t feel sorry for ourselves (most of the time, anyway), and we support one another in our unusual lives. We have learned to take it all in stride and not make our simple lives more difficult than they need be. The terrain we travel is always navigatable, even if we weren’t given the road map. Sometimes you just need to stop and ask for directions.

Daniel is my son. He is never going to marry, hold a job, or have a regular conversation with me. Yet he is one of the main reasons that I smile every day.

By Carolyn Murray

* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.

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