Beautiful essay on parenting - "Dragon Mom"

Parent Cafe
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<p>I don’t think I’ve ever read anything as poignant as this beautifully written opinion column:</p>

<p><a href=“http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&scp=1&sq=ronan&st=cse[/url]”>http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&scp=1&sq=ronan&st=cse&lt;/a&gt;&lt;/p&gt;

<p>The writer is the mother of a beautiful toddler with Tay-Sachs disease. Her child will not live to see his third birthday. She writes about parenting a child with no future.</p>

<p>I noticed that the author has written a memoir:</p>

<p><a href=“http://www.amazon.com/Poster-Child-Memoir-Emily-Rapp/product-reviews/B001P80LEG/ref=cm_cr_dp_all_summary?ie=UTF8&showViewpoints=1&sortBy=bySubmissionDateDescending[/url]”>http://www.amazon.com/Poster-Child-Memoir-Emily-Rapp/product-reviews/B001P80LEG/ref=cm_cr_dp_all_summary?ie=UTF8&showViewpoints=1&sortBy=bySubmissionDateDescending&lt;/a&gt;&lt;/p&gt;

<p>about growing up with a disability.</p>

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<p>Beautiful. Thank you for posting this.</p>

<p>May we all learn to love our children for who they are now, not for what we expect or hope them to be.</p>

<p>Keeping the author and her family in my prayers.</p>

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<p>Thank you for posting. So sad…</p>

<p>Had no idea that Tay- Sachs was present in the overall population and that the prenatal test was not accurate…very scary</p>

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<p>What a tender, passionate essay. The last sentence says it all.</p>

<p>I just ordered her book. I work in a middle school and look forward to reading her insights about having a very visible disability in this setting. Her bio is very impressive.</p>

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<p>Wow. What a moving essay.</p>

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<p>I read it with my coffee at the airport at 0500.
I honestly do not understand 1)why she tested for Tay Sachs 2) how in the world she got 2 false negatives. I wonder if her son has a condition that mimics Tay Sachs but has a different genetic pattern. </p>

<p>It was an amazing commentary. No poor me- just a highly evolved confession about the life of a real parent. </p>

<p>Because of the work I do, it is nearly daily even that I am with parents grieving the loss of the child they thought they were going to have. Their heroism and love, and ultimate acceptance, are humbling and inspiring both. There really are no words.</p>

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<p>I do not have NY Times access, but my parents get the paper. Can you tell me what section and page I can find this on? I would love to read it and will see my parents this evening.</p>

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<p>what a beautiful piece written by such a loving mother. the most moving part for me, is how she helps us see how the experience of mothering Ronan requires letting go of mothering as we know it…thank you for sharing this, a reminder for all of us to live and love in the present, and let go of expectations of a future we may not get to</p>

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<p>I’ve ordered her book after reading the reviews.</p>

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<p>snowball, It’s in the Sunday review section, back page. There is an exquisite photo of the author holding her sleeping child. </p>

<p>robyrm2, I was surprised that she was tested for TS, too, and that she did it twice. I thought only people from vulnerable populations were tested. And isn’t it something for which both parents must be carriers? As you suggested, maybe it is a similar genetic disorder, rather than TS itself. </p>

<p>I was also struck by the lack of the “poor me” attitude - especially when I learned that she has coped with her own serious disability.</p>

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<p>I also thought it was recessive- which would mean both parents must be carriers- I wonder if it is in her husbands family & if that is why she was concerned about it?</p>

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<p>That makes sense, emeraldkity. If the husband is from a vulnerable population, that would be a good reason to have the test. The author might not have had full information on her ancestors.</p>

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<p>Thanks for posting. Makes you think about what is important.</p>

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<p>Beautiful. Thank you for sharing this.</p>

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<p>She is so right too, that none of us know how long we will have our children with us.</p>

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<p>They are on facebook as “Little Seal”</p>

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<p>So poignant, and touching. I must admit my denseness here, why is she a dragon mom? What is a dragon mom? I got the “tiger” mom (which I personally did not find touching or poignant or attractive in any respect). This does not evoke fire breathing to me.</p>

<p>Many years ago we knew a little boy who also had a very short prognosis and lived only a short few months. His parents also tried so hard to make his days the best that they could.</p>

<p>This story does drive home the essence of the human condition.</p>

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<p>Re: Two rounds of negative tests</p>

<p>There have been similar cases of children born with cystic fibrosis even though only one parent was an identified carrier. If I recall correctly, the analysis revealed that the child ended up with two copies of the carrier chromosome from Parent A, and no copies of that chromosome from Parent B. The researchers speculated that at fertilization there had been a trisomy of that chromosome, and when the chromosomes lined up during cell replication, one of those three copies (unfortunately the “good” copy) was eliminated from the cell line because it had no pair.</p>