Mamas making a difference

Recently, I had the opportunity to read Laura Shumaker’s book,  A Regular Guy:  Growing Up with Autism. a memoir about life with her autistic son, Matthew.  It’s an honest and open look at the struggle to obtain a diagnosis (which is something I’d never experienced–I’d always thought the black-and-white pronouncement of trisomy-21 was exceptionally harsh; now I’m beginning to see it as a mixed blessing) and especially, the decision to place Matthew, as an adolescent and later, young adult, in an out-of-state residential facility/school.  It’s a story many parents are reluctant to tell–about how they came to the point in their parenting where they felt out-of-home care was the best option.

Another mama I’ll point you to is  Ellen of the blog, To the Max. In this post, Ellen answers the question, “What I wish I’d known” about life with her son Max, who had a stroke at birth.  She got me thinking about how I might answer that question for myself, and my answer surprised me with its simplicity:  I wish I’d known we were all going to be okay. 

And of course, we are.

(Also?  I’d tell myself the Legos will never, ever be completely picked up, so forget about it already.)

I’m wondering, for myself and especially for all the new moms and dads out there, what do you wish you’d known, right from the start?


14 thoughts on “Mamas making a difference

  1. I wish I had known that nothing about DS would be as scary as it first seemed. Now that Quinnlan is 2-1/2 & walking, laughing, talking & signing, I try to remember that he can do anything. It might take him longer than other kids to get there, but the only limits are ones we create. I don’t know that I would have been ready to believe it fully that first week in the hospital when he was born, but I try to come back to it whenever there is a challenge ahead.

  2. I love Ellen’s post.

    I, too, wish I had known that it was going to be ok.

    I wish I hadn’t been so afraid of Ds because it is so far from the worst thing that has ever entered my life. I wish I hadn’t of been too sad to celebrate the birth of my child. I wish I had cried less and snuggled more.

  3. John is two weeks away from turning two. I look back to getting the diagnosis (we were given that by a doctor who we had never met, before we even got to hold our son), and I remember being so scared of what the adult years would bring. Who would take care of him? Would taking care get in the way of my daughters persuing their dreams? Would he be happy? Would he be lonely? That concern is still very real for me; I’m still not good at not looking to far ahead. I never worried about loving him. I did worry about all of the medical issues at first; especially since he needed open heart surgery. I guess, to answer your question, I wish I knew how easy it would be to see how much he loved us. I wish I knew that while we felt connected to him; he would feel equally connected to us.

  4. When I recently read the book, Gifts, that was a common theme in the mothers’ stories – that looking back, they wished they had known they were going to be okay. And that’s what I wish. When I read the very early posts in my blog, I cry because I remember so well being just completely flooded with feelings of fear and hopelessness and despair. And only a short 6 months later, here we are . . . still learning, still coming to terms, but okay. Very okay.

  5. We’re four years into our “knowing” and I wish I would have known that loving my son was going to be *so* easy.

    One of my big questions when given the diagnosis was “Can I love this baby enough?” (Selfish, huh?)

    Turns out, I love this son of mine so much that I often hear “Mommy, go away!”. LOL!

  6. As we’re only a few months in my “what I wished I’d known” relate to the period between diagnosis and birth. Like Jennifer I wish I had known that Down’s syndrome is nothing to be afraid of. I wish I’d known (or believed) that children with Down’s syndrome are more like other children than they are different. I wish I’d spent more time looking forward to G’s arrival rather than worrying about it. I wish the information about the fantastic services that are available for G had been given to us when his Down’s syndrome was diagnosed (or at the latest once it was clear we were going to continue with the pregnancy) rather than after he was born.

  7. I wish I’d known about the blessings. That is what was so unexpected: the blessings. In many ways our lives have been enriched by my daughter, often directly. In other ways those around us have been blessed because of the things we’ve learned that have allowed us to help others, or paths we’ve gone down that we would never have known without Mary.

  8. I wish I had know that the dreams I lost in that single moment of knowledge (the moment I saw that she had Downs)would be so quickly replaced by new dreams. And that they would be just as good! 🙂

  9. This is Joyce, Sarah’s mom. I am certainly not a new mom, but I am still learning every day. The beauty of having a teenager is you can reflect back on the years and see more clearly how it all comes together. The one thing I wish I had known is for the people (both family and friends), that ran from us upon learning of Sarah having T21, they were all eventually replaced with loving, caring individuals that were and are so supportive. If I had known that I would have spent less time being angry at those that had treated us poorly and had a more open heart and arms to accept the wonderful new friends that were sent to us.

  10. I wish I had known that the love I was feeling for Aidan was no different than it would be for any child. Maybe, it was even a little stronger. I wish I had known that Down syndrome is nothing to be afraid of. I always want to tell new parents that everything is going to be fine, but really I think it’s a journey to get to “fine,” and every person really needs to “take the journey.”

  11. Hi. Thanks so much for the mention, my post has gotten such nice responses. I really hope I am making a difference. What I forgot to say in my blog is along the lines of what you said: I wish I would have known that Max would do better than the doctors said he would. Of course, nobody could have known what the future held—but if the damn doctors hadn’t done such a number on us at the hospital where he was born, after he had the stroke, maybe I would have had more faith and hope. You know that memory eraser gadget Will Smith used in Men in Black? I wish someone could have waved one of those over my brain to rid it of all the terrible things the doctors predicted. Max has amazed us all. I’m sure you feel the same about Avery.

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