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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
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.
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This is so beautifully written x
@Lynnfitzp: Thanks so much Lynn xxx
I still wander on occasion if things had been different for my son but I remind myself that his condition is in every cell and he would not have been him if he was born without his condition. This is who he is on a genetic level but not who he is as a person. I see his absolute love of his life . His struggles for independence limited as they might be . I see that he negotiates his world very well and his life is full and happy and who am I to impose what I wanted on him. He is who he is. A fantastic well rounded young man. Happy grumpy typical teenager non typical teenager. He is who he is and I’d been so lucky to have been part of his journey .
Mothers of Special needs kids are like ninjas they are pretty much super human walk a day in their shoes and see … Respect !
@Anthony Wrasse: I know you mean well but it’s just not really a helpful way to look at things. Yes, what they do is amazing but they are not superhuman. They are human just like the rest of us and they struggle just like anybody would in their shoes. It’s not fair to expect any human to work as hard as the do, usually with such little support, monetary or otherwise. They need time to themselves like everyone else, they need decent support services.
Don’t know where you get the strength, and at the end of the day we are all human. All of our minds wander, dreaming about better materialistic things. In your case you just want a timeout and that’s not too much to ask. I can’t imagine what you go through each day looking after your child. I recently became disabled quite severely, and is taking some time to adjust. And there are days where I just have to imagine being somewhere else, as that is the only way to cope. Or I Think back on happier memories.
An excellent article Tracy and best of luck to all three of you.
Wow Tracy, insightful article and beautifully written. Thank you for sharing some of what life is for you as a mother of a severely disabled child. Society needs to hear and see the problems faced by you and others who have to deal with so much every single day. You are amazing. X
Beautifully written. What my son’s life and what my life would be like if he wasn’t disabled is always on my mind. It’s like a tv playing in the background while I get on with reality. When I do get a chance to sleep, I constantly have vivid dreams where he does all the things he wants to do and he gets everything he deserves from life. Far from making it harder to cope, these fragments of a better existance for both of us sustain me on days it seems an insurmountable task just to get from one minute to the next. Full respect to you.
Really well described.
Beautiful article Tracy, literally had me in tears. Very honest and real x best of luck to you and your boys
It’s hard to know what to say when you read an article like this.i just wish you and your family the best of luck for the future and i hope everything you need you get.your amazing.
I can’t imagine how tough it must be but you seem like a really quite fabulous mother and Brendan is very lucky and I just wish you all the best.
Brendan is remarkably beautiful. And so are you Tricia. Your story really touched me. I had a profoundly disabled daughter who died at nine weeks and I wonder every day how her life would have unfolded had she lived. I can only salute you and wish you strength and peace as you navigate your lives together. Brendan is blessed to have such an articulate and sensitive mother.
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