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'I used to have dreams when he was little about him walking and talking. I would wake up sobbing'

It is dangerous and upsetting to wonder what it would be like, if only, writes Tracy McGinnis.

Tracy McGinnis Special needs mom, writer and advocate

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…

I am a mother to two amazing boys: Declan who is 8 and Brendan Bjorn who is 12. Brendan was born with congenital CMV, which has left him severely disabled and medically fragile. He is my angel.

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 in his bed, smiling happily at his favourite teddy. I see his thick, dark brown hair and his beaming blue eyes. I see his high cheekbones and those eyelashes that all the girls drool over. I see 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 danger-zone of wondering what would it be like.

Imagining a different life for him

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I imagine him walking and talking, and laughing at winding me up by telling me what happened at school today with a girl he likes.

I imagine him standing at the altar waiting for his soon to be bride as she walks down the aisle toward him. I imagine him looking lovingly at her, the way he always looked at 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 another subject? 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.

What can never be

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 is a lone parent to two sons, aged 12 and 8. Brendan Bjorn (12) is severely disabled, medically fragile, and has very high palliative care requirements. She works 24/7 as his full-time (unpaid) carer, having had to give up her career as a professional child and family counsellor to care for Brendan. In her blog, Transitioning Angels, she writes about the journey of caring for a fragile child like Brendan. She is active in the special needs community in Ireland, working for reform in services, supports, and care for children with disabilities, and for their family carers. 

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About the author:

Tracy McGinnis  / Special needs mom, writer and advocate

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