Rick Santorum, Meet My Son

New post on Slate.com – “He has a degenerative disease that has left him blind, paralyzed, and increasingly nonresponsive. If I had known before he was born, I would have saved him from suffering.”

http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html

18 responses to “Rick Santorum, Meet My Son

  1. My heart continues to break for your whole family, especially the pictures where Ronan looks so happy. He, and you and Rick, are lifted daily in my prayers.
    Paul+

  2. Emily,
    I just commented on your post on Slate however have found I can comment here.

    Our daughter Savannah was diagnosed with Metachromatic Leukodystrophy (which is similar to TS) at the age of 2 and a half. Before that she was normal…loved swimming and dancing to winnie the pooh and books and honey on her toast. Within a year she went from that to a bed ridden tube fed paralyzied toddler. It is horrific as a mother and a parent to watch this happen helplessly. So I understand your pain with Ronan.

    Savannah died at the age of four and a half however could still understand the horror of what was happening to her..she never lost her sight thank god and would communitcate with us through blinking.

    And of course after our babe’s die there’s is the horrid grief to deal with…I applaud you for writing this post on the right to choose if you bring another soul onto this earth that will endure a life of horrible sufferring.

    We have another daughter Dempsey who thankfully is only a carrier…we also tried pre-genetic testing with IVF in Australia but weren’t successful.

    I look forward to reading more of your wonderful writing about your journey. And I look forward to purchasing your book when it is published.

    I write a blog about the loss of my sister, mum and Savannah that happened all over a 3 year period…each to different deaths. I also write about living life ‘after’ the death of a child. If I can ever answer any questions for you I’d be happy to.

    Sending a hug and strength to you for those hard days…I still remember them like they were yesterday.
    with love
    Diana Doyle x http://sunshineinabluecup.blogspot.com/

  3. emily you are an extraordinarily brave woman. The piece you wrote for slade is one of the most amazing ones I have ever read on the very complex and heart breaking topic of prenatal testing.

  4. Thank you, Emily for writing so honestly. It is hearthurting to follow your journey with little Ronan. He’s beautiful.

  5. You are amazing. Love to you and Ronan.

  6. Thank you for writing this.
    Love to Ronan.

  7. Reading all of your eloquent work about your beautiful little boy (in the NYT, Slate, etc.) has made me look at the world in a whole different way. Thank you for sharing Ronan’s amazing spirit with all of us.

  8. Pingback: a sense of perspective with mr. cranky » Our Little Life with Baby

  9. Terminating a very much wanted pregnancy (or in my case, a selective reduction) can be both an act of love and bravery, and an enduring grief – a decision that is easy to make, and agonizing to do. So few people understand this complicated truth. Thank you for showing, so beautifully, the messy reality of the choices we may encounter, and the fierce love with which we must face them.

  10. I’ve been following your blog for a while, but I just wanted to say that I think you are so brave. So so brave. You have so many people out here sending you and your family support each and every day.

  11. I wish you didn’t have to be so brave, Emily. I wish you didn’t have to face all of these issues. But I thank you for sharing your hard-won wisdom and heartbreaking realities. Your writing is filled with eloquence, grace, and the pain of an experience no mother should have to bear. You are a courageous woman and an incredible mother.

  12. I read the link to slate.com and found over a 1800 comments! Thats incredible. I copy my comment at the end. If you like, please visit my daughters blog at http://www.iarapirata.blogspot.com

    There are many many people that think just like you, and the only way to think just like you is to live every day just like you. Thank you Emily. Loves from Argentina.

  13. Emily – I don’t know how you get through each day. You have helped so many of us look at things differently. For that, I am truly grateful. Ronan is such a precious boy – it is so obvious in his eyes and in his smile. You are all in my prayers.

  14. Thank you for writing this article. It was hard to read the responses, however. My son’s genetic disease is life-shortening and I terminated my second pregnancy out of fear of it happening again. I couldn’t face a second trimester abortion that would have followed the CVS, which couldn’t take place before 12 weeks, and aborted at five weeks instead. I don’t regret my decision. We could not afford the health care– we struggle to pay our mortgage with the rising costs going along with my son’s illness– nor could I have watched another child go through this. I am thankful I had the choice, for myself, for my family, for my living son, and that the procedure was safe. I do wish that society was more understanding, that the term ‘abortion’ didn’t bring people out of the woodwork to call me a murderer. So thank you for voicing your thoughts, thoughts that some of us are afraid to voice where others can hear. I would love to be as brave as you.

  15. Dear Emily & Family:

    After first reading “Rick Santorum, Meet My Son,” I read your book “Poster Child.” Thank you for writing this article and your book.

    One of the mostly “hidden” disabled, I have been a feminist since the age of six and an informal student of medical ethics for several years. I consider elective abortion a necessary evil that should absolutely be safe and legal, but am much more conflicted about selective abortion.

    Although my husband and I are childfree by choice, I work in a tertiary medical center and often wonder what we would have done had I become pregnant and received a prenatal diagnosis. In the event of any degenerative neurologic, fatal disease, I am certain I would have aborted and comfortable with that decision. Down syndrome? I am reasonably sure I would have aborted, and less comfortable with that choice. Spina bifida? Lesion location (often an indicator of prognosis) would have been the deciding factor in whether to abort or not; regardless of whether I aborted or gave birth, I may have regretted the decision. Unless physical deformities were multiple and severe (considered incompatible with life or likely to result in significant pain and suffering), I probably would not have aborted a child whose intelligence was expected to be normal.

    I was aware that Rick Santorum had a disabled child, Bella, but until recently did not know Bella’s specific diagnosis was trisomy 18. While I respect the Santorum family’s right to forego prenatal testing and give birth to a mentally and physically disabled child, I am troubled by Bella’s situation. To give birth to a trisomy-18 child and provide comfort care is
    entirely understandable and humane. To seek aggressive medical
    intervention, such as treatment for frequent, recurrent pneumonia infections, is not.

    Economic concerns alone question repeatedly saving the life of a child who is physically disabled, mentally disabled, and terminally ill whose healthcare costs are high, but the problem is more than one of simple utilitarianism. What about the child’s prolonged pain and suffering? Also, why are people whose authoritarian religions comprise belief in eternal life sometimes the most reluctant to withdraw aggressive treatment?
    http://www.ncbi.nlm.nih.gov/pubmed/22465877

    For now, Ronan is your axis. When the time comes that he is no longer physically present in your daily lives, I hope you have the chance to be parents again to a child who (biologically yours or not, disabled or not) grows to adulthood.

  16. Pingback: You Should Read “Rick Santorum, Meet My Son” | amandatheatheist

  17. I am sorry to hear about your son. My friends are going through the same situation with their daughter Savannah. Please, if you have any information which could help them get through, contact the news source who posted their story…

    http://www.myfoxtampabay.com/story/20917134/2013/01/31/hoping-to-find-a-miracle-on-social-media

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