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The Mothers Who Came Before

by Julie Keon on May 9th, 2014

I think of them often. You know, the mothers who came before me. The mothers who were the trailblazers in this land of special needs.
They are the mothers who were urged by not only the professionals who knew best but by their family members to place their babies in institutions; a better place for children like these. I think of how they had to take their most vulnerable child and leave him or her in a large facility filled with other people’s children who were unable to be cared for at home. I think of how they must have been broken by that. I think of how they must have tried  to go back to living their normal lives as though it was perfectly natural to leave your child in another city to be cared for by strangers. But they didn’t have much choice. They were giving birth to a child with special needs in a society that hadn’t evolved enough to understand that an institution isn’t a suitable home for children with special needs in most cases. I am acutely aware of the fact that if we didn’t have all of the support that we have, we would not be able to care for Meredith at home either.
And then I think of the mothers who refused to hand their children over and were sent home with sick children and told to love them til their death. The hours spent trying to give them food because feeding tubes weren’t an option. Many times a diagnosis wasn’t available and they cared for children with medical needs well beyond their capabilities and without the “village” that most of us have today. All they had to go on much of the time was love. And that was all.
The mothers that came before me fought for their children’s right to an education and their right to inclusion not knowing at the time that they were fighting for all of our children. They did it in isolation because children like ours were much more of a rarity then and social media and the Internet were stuff of the future.
I remember starting out on this path and meeting mothers who were further down the road than we were. One mother calmed my fears and worries through email. Her daughter was fourteen then and she gave me such hope knowing that life could be okay again; it wouldn’t always be a crisis. And our first Case Manager with CCAC, had some inkling of what we were going through as she, too, was the mother of an adult son with special needs. She gave me a button that said “Mother from Hell” on it and told me to wear it when we went to the children’s hospital or to doctor’s appointments. She gave me the courage to allow my inner mother bear to emerge when necessary. And more recently, a fellow author and mother of an adult son with special needs and who is a lot like our Meredith, told me, as she was about to go on a tropical vacation, that one day, my husband and I would be able to do the same. And I believe her.
I think of them all…..the ones I have met and the ones I have never met. This Mother’s Day, I salute you and thank you for making this path we are on a little less treacherous. By wearing it down with your own footsteps, you have allowed our steps to falter less.

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  1. Noreene permalink

    You have such a talent Julie, to express so well what many of us feel and think. I too think so often of those mothers -and fathers- who led the way for so many of us, when they dared to not listen to the “professionals” back then, when institutions were the only option for outside help. their courage has been an inspiration to many. happy Mothers Day!

  2. Judie permalink

    Thank you for this reminder. While I have been in this position for 35 years. I can’t imagine my life any other way. At the time, we were also told we might want to put her in a place, when it became too much. But she is still with us much to the doctors surprise. She may not be able to communicate, but she has taught me so much over the years. Our daughter is our life and purpose in this world.

  3. Dear Friend and Wonderful Mother: You WILL go on that vacation one day – and you will advise other young mothers and ease their path. Your wisdom is vast already, I can’t imagine how many you will touch in your lifetime. Happy Mother’s Day!

  4. trina permalink

    I truly am in ‘awe’ of you sometimes. Your ability to put thoughts into words is amazing. You have and continue to help so many parents and families of children with special needs but you are also helping the rest of us understand and empathize and feel what you and so many have gone through. How many people can say that they are truly helping others and making a difference in this world the way you have and are? You really do rock!!

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