In the first years of Brendan Bjorn’s life, I waited for each milestone to be reached. I watched intently for signs that he could indeed possibly reach them. Most often, I waited and watched in vain, as the damage to his brain caused by the common virus CMV (cytomegalovirus) would betray that potential time and time again.

He never reached most developmental milestones, nor will he ever.

I will never forget Brendan Bjorn at his strongest. The days he could propel himself – albeit with great struggle – across the floor in a walker. The days he could reach out for an object, ever so slowly as his body fought against itself, and gently grasp the object with his hand. The days he could stand in a piece of disability equipment aptly called a stander.

What a sight it was to see him standing upright for the very first time! He was two years old. By the time he was nine years old, he could no longer use a stander. His hips with their multiple surgeries, his decreasing circulation to his extremities, and his worsening scoliosis, made it a painful experience for him.

And so, he never stood upright again. Nine years of age.

Today, I wait and watch in a much different way.

The past nearly 18 years of fighting for new developmental milestones to be reached is long over. The back-breaking nursing level care I provide around the clock to keep him alive for as long as I could, has come to an end. It is still the back-breaking nursing level care around the clock, but it is no longer to keep him alive for as long as I can. It is to keep him as comfortable as I can and to keep him from any form of suffering or pain or unhappiness.

What I would like people not on this journey to understand is that I am losing part of my heart, ever so slowly over the last number of years, as my first born son’s time on this earth inevitably winds down, and it is tearing my heart into absolute shreds.

Waiting and watching for someone you love more than life itself, someone who you actually brought into this world, to die is like no other pain imaginable.

I always knew that all of my efforts, all of these years, would only delay what was to come: That my precious son would die. I knew that. I suppose in the unconscious self-protection of the mind, I spent many years not so focused upon that cruel fact. But lately, it is on my mind and in my heart every single waking moment I have…and even sometimes in my dreams while I sleep…and at times I literally can’t breathe at the thought of it all. This isn’t the natural order of things. A child should outlive his parent.

How devastating nature can be to think that a common virus contracted while pregnant, likely while I worked as a therapist to help young children, should ultimately be what takes my own beautiful child away from me.

To my friends and family, and to those of the other parents going through this journey with a child who has a life-limited condition, I ask you to please, please be gentle as our hearts break; be patient as we find it hard to be positive in all we say or do; be there, even if it’s in silence, just providing arms of comfort to hold us when we collapse.