I have a confession to make to my fellow special needs parents. This evening, I broke one of our unspoken cardinal rules: I let my mind wonder what it would be like if my son wasn’t severely disabled. Twelve years plus into this journey and I know better, but something came over me tonight when I was getting him sorted in his bed. I lost control and it happened…my mind wandered into that place that can only bring sadness and heartbreak…that place of imagining him with no brain damage, no resulting disabilities, and completely healthy.
It is dangerous to wonder what it would be like, if only…
If only that microscopic, common virus (CMV/cytomegalovirus) didn’t enter my body while I was pregnant.
If only that virus didn’t cross through the placenta and into his just developing body.
If only that virus didn’t attack his brain just as it was forming in the first trimester.
If only.
Tonight, I looked down at him laying in his bed, smiling happily at his favourite teddy. His thick, dark brown hair and his beaming blue eyes. His high cheekbones and those eyelashes that all the girls drool over. His perfectly shaped nose and beautifully smiling mouth. And then it happened. That was the moment I slipped up and my mind went racing carelessly into the dangerzone of wondering what would it be like “if only” and there, I saw him…
walking and talking and laughing at winding me up by telling me what happened at school today with a girl he likes…
standing at the altar waiting for his soon to be bride as she walked down the aisle toward him and as he looked lovingly at her the way he always did to me…
I wondered would he be smart or sporty or both. Would he be well mannered and kind. Would he be interested in maths or science or literature or what subject, if any. Would he be affectionate and open or quiet and shy. Would he love me as he does today as he is now.
I wandered where I shouldn’t have and I wondered far too much.
I looked back down at him when, with his much loved laughter, he brought me thankfully back to reality. You see, as difficult as this reality is, wondering what it would be like if it were different is even more difficult because that reality can never happen.
I used to have dreams when he was little about him walking and talking, and I would always wake up sobbing. As the years have passed, those dreams simply don’t happen anymore. I think that reality seems to have a way of invading even our dreams. But, I also think that it is for self-preservation, for if we let our minds wander into the land of what can never be, we risk losing our footing on this frequently rocky path.
Tracy, this is heartbreaking. A small indulgence yes, but totally understandable. You had an emotional week recognizing his deterioration, so this is another step towards honouring Brendan’s reality. It clarifies his frailty towards what might have been. He is so lucky to have such a loving mother. X
Thank you so much, Deborah. Your kind comments mean so much to me, truly. You’re a dear friend xx
This is a really powerful blog – it should be required reading for people involved in the health service. Keep strong.
What a wonderful compliment, Liam…thank you!
Tracy, you are an amazing person. Such an honest and truthful story. Such stories should be part of our teenagers curriculum to make them appreciate what they have. Well done and thank you. My brother was special needs also. Caroline
This is beautiful and powerful. I don’t know what to say just that my heart is crying and ‘thank you’ for sharing your thoughts for your darling son.