woensdag 9 december 2015

"If you had known then what you know now, would you have had him…?"

A total stranger comes up to me. She's a woman that saw me walking with my son at the Supermarket. She has tears in her eyes and tries to ask me something. I see her struggle to find her words and take her to the coffee corner and encourage her. "Ask! Don't hesitate, I have an open mind" I tell her. She caresses her belly and asks me with a soft voice: "If you knew what you know now, would you have had him…?"

I did not see this one coming and was taken aback. I see that she is shocked by her own question and wants to walk away. I tell her quickly that I think her question is very brave, but I need a moment to think how to reply. To buy some time I ask her what her doctor has said. “…It’s a little boy who is safe in my womb, but once born, his life will not be pretty”, she tells me. The doctor has explained to her that he will suffer. He will not crawl, walk, stand, nor talk. Maybe he will not even be able to eat, drink or enjoy tasting the sweet and savory. The boy will have a hard time developing if at all. His muscle tone will first be weak, but he will grow hyper tone as he grows older. The risk of epilepsy is very grave and will be difficult to manage, complicating his life even more. The child will not play nor interact with other children or even his parents. He will not go to school but a form of day-care maybe...

Her son will be like my son. Only she knows in advance what we had to discover gradually. Someone, a total stranger, a young mother, walks up to me in the middle of the supermarket, to ask if I had known then what I know now about his care, the amount of support we get and his quality of life, would I still have had him?

No. I tell her in all honesty and with tears in my eyes, I would not. When I see how our family has had to struggle and let go of all our dreams and when I see what we have achieved for him, how little his joy in life is, I must admit in all sadness and sorrow, but with conviction, I would not.

Right at that moment, Bram has a seizure, a tonic-clonic one. We look at Bram (everyone looks at Bram) and we look at each other and see the tears running down our cheeks. I give her a hug and can only wish her a lot of courage.

Years later I met her again. I had Bram with me, a big man (1.85 m) in a big wheelchair even more affected by his disabilities. She walked up to me to say hello and I recognized her immediately. She was looking good and had two young children at her side. Healthy little kids. She is so grateful she said. Life has been good to her. She has a good life, nice job, a career, even! They travel a lot and enjoy every day. "When I listen to the news and hear about all the budget cuts for care and all the problems people are having to get their care organized at the moment, I often think of you ...."

We both went our way. She looked over her shoulder once more to see a life that she chose not to have. I too looked back once more, with tears in my eyes, and a touch of envy, loneliness and sorrow, I was looking at a life that I had hoped for but was obviously not meant for me.

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