Your heart will break and break and break again

Laurie of Days with Dylan wrote me an email asking about the part in my book when our family practitioner tells me that my life, as Avery’s mom, will be filled with heartache. She wondered if what he said had proven to be true for me.

He didn’t know what he was talking about, of course, but I didn’t know it then. Especially in the beginning, when I was trying to find my way, I let the words of doctors and nurses and other professionals carry a lot of weight. What I should have done, what I would have done if I’d known better, was to listen to the parents of babies and children with Down syndrome. We quickly become the best experts on our kids.

So this is what I wrote back to her:
“About the heart breaking, the answer is no, not in the way he meant, but yes, too, in a different way. I wonder, do you have other children? My heart breaks a little bit almost all the time over all my kids…the way I love them so much, the way they’re growing so fast, and I miss the babies they were, but I love the little people they are becoming…so that’s what I’ve found. It’s the same with Avery. I miss all the old stages of him, and that makes me a little sad, but I love who he is now, too.”

Thanks, Laurie, for the excellent question and for allowing me to share it here.

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10 thoughts on “Your heart will break and break and break again

  1. jennifer, I am a new mom to a baby boy Cody who is a month old ,he is my third child and third boy. I had a prenatal dx at 26 weeks and one of the first books I read was yours. It is a great book written so honest and with so much love…I cried a lot reading thru it but that line your heart will break and break again stayed with me the most……I hoped so much that it wasnt true and I am now so happy to read the above answer…………thanks Sue

  2. Jennifer-You are so right. As parents, we are the experts on our children-not the medical professionals. In fact, I’ve found that the BEST doctors have been the ones who listened the most and included my observations before drawing any conclusions or recommending any course of action.

    I have found other parents of children with Ds to be the MOST valuable resource and also the greatest source of hope. I think it is true that, as our children with Ds get older, the gaps between their abilities and the abilities of their “typical” peers grows greater. The thing no one told me was that you very quickly get to a point where it doesn’t matter! I love Jack for who he is and every accomplishment is so joyous!

    I also spend much less time fretting over things that aren’t as important. I related so much to your thoughts about how, if you had not had to make your way through the difficult times, that you might be worrying about your hair or your clothes and missing a moment with your children. I used to get so caught up and really couldn’t be “in the moment”. Jack has taught me how to do that with him and with my daughter. I’m so grateful to have this insight now so that I won’t miss too much as they grow up.

  3. Jennifer, this is a beautiful post. I too think of that part of your book often. My little Matthew is now 6 mths and is currently recovering from open heart surgery he had 3 weeks ago to repair his AVSD which is common in Down Syndrome. It broke my heart to hand him over to the OR nurse but I know it would have been the same for either of my other 2 children. I cannot tell you how much your book meant to me and touched me. At the hospital I met another mother who had twin 5 month old girls, one with Down Syndrome and AVSD. I have passed your book on to her and I’m sure you will have the same positive affect on her life that you have had on everyone who has read you book!

  4. Jennifer, thank you so much for writing about this in your blog. Laurie and I have talked about that passage in your book (our babies with DS were born very close to one another and we were reading your book simultaneously), and I know it has stayed with me and frightened me somewhat. But I think you are so right – all of our kids break our hearts all the time (Finn is no. 6 for me, so I have puh-lenty of experience in having my heart broken by my kids), just by filling our hearts so much. To this day, I can’t even walk into my 11-year-old’s classroom without getting all teary and choked up – and I can’t even explain it . . . but yes, it’s like a little piece of my heart breaking. Anyway, thank you so much for your eloquence, as always.

  5. I just finished ROAD MAP to HOLLAND. And my heart broke and broke through out it. And in the way that you mention here: for life and the way that life grows and changes and blooms and withers and grows again. I cried a little, it seemed, on every page. I especially cried when you spoke of forgiveness. I loved your book. I bought it last year and waited until I knew I’d have time to read it without too much distraction. I’m not a mother, but ROAD MAP to HOLLAND made me want to be a mother. It made want to have children and to have the courage and the love that you have with your family. And for a little while, the time it took me to read your book, I got to experience a little bit of motherhood, and beauty, and grace. Thank you for your amazing gift.

  6. What a beautiful way of wording it. I feel the same about my two children. It’s like that old saying about how deciding to have a child is like deciding to have a piece of your heart forever walking around outside of your body.

  7. What a lovely and inspiring answer. I think all parents’ hearts break at some point or another; it’s what we choose to allow to break them that matters. Will we choose the challenges —the pat, easy way to break— or will we choose to allow it to break from being “too full” from love and pride at how they grow and change?

  8. Strange–I was justing thinking of that part of your book this morning. Wondering if at some point it will prove to be true. John is only 20 months. He isn’t walking or talking yet. I have no doubt that he will do both, but every so often I get the passing “what if he doesn’t”. Will my heart break yet again? I think having a child with special needs makes your heart a little more susceptible to all emotions. I feel more deeply, the love and the pain, since having John.

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