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Video: Grieving mom: Love your kids ‘in the moment’

  1. Closed captioning of: Grieving mom: Love your kids ‘in the moment’

    >>> in january 2011 emily rapp got some devastating news. her 9-year-old son had a rare and terminal disease . she describes her journey through grove. we'll talk with emily in a moment but first a remembrance in her own words.

    >> i was and have been many things, but since january 10th , 2011 , i have been one thing in particular, ronan 's mom. the more i wrote about ronan , the more i understood that the only way grief would not take me down completely was to greet his diagnosis head on and make my world big, make his story known. we lifted ronan from his crib and kissed him. there was joy. we laughed. we lived. i took him hiking and rubbed his fat feet in the dirt and lifted his face to the juniper-scented breeze. he went on road trips , parties, coffee shops . he was our xcompanion, our child, our beloved. after ronan 's diagnosis i often stood over him, sleeping in his crib and wriished i could lie next to him, press him to me, untangle his dna, restitch it, rebraid it, fix it, make it right, take it back somehow, change the odds. i marvelled at how beautiful he was, how wonderfully made and yet from the moment of his birth and even before, it had been chipping away at him.

    >> emily rapp joins us now. good morning.

    >> good morning.

    >> i'm so sorry, you lost your son. it's hard for me to even think about this, but you lost your son three weeks ago. how are you doing?

    >> okay.

    >> you and your husband are okay?

    >> ronan was very ill and at some point when you're that sick, it's better to be in another place. so i'm happy that he's released from his body but, of course, i miss him.

    >> you had three years with a beautiful little angel .

    >> beautiful.

    >> and the message that we read in your blogs that are, by the way, on our website at today.com and also in this beautiful book "still point of the turning world" is wonderful. it's really about embracing every moment and living with that joy.

    >> that's right.

    >> and living as a parent, embracing your children every day.

    >> yes. i think it's really important. the message that i want the book to convey is that we should love our children for who they are in the moment right now, no matter what they become or what they achieve and that that's an incredibly important message to send to parents of healthy children or terminally ill children. it's sort of the truth of ronan 's life.

    >> you write ronan was ronan . he was never just a sick baby. my life as his mother was more tan just managing the illness and the many difficulties it presented. explain how you got through day-to-day.

    >> i got through ronan 's illness and his death by writing this book, which saved me in every way, and by reaching out to other people so that people in the national organization, my amazing group of friends, my family. everyone sort of surrounded me and supported me. i did not feel isolated at any time during this journey.

    >> you call the mothers and other parents who have been through this, who have also experienced loss dragons. dragon moms.

    >> dragon moms.

    >> what do you mean by that?

    >> i like the image because a dr dragon is medieval, rare, inconvenient. and it's a very rare illness and also a medieval illness. we're big and unwieldy and are loud and have fiery magic and all of those things.

    >> you describe what rick went through as well. he fathered ronan beautifully, attentively, lovingly. his parenting approach was patient, soft but intense, earnest and honest and above all all, vigilant.

    >> yes. rick was a beautiful father to r ronan . any kind of diagnosis like this, you can imagine, is delvastating to individuals and couples. he was an amazing father.

    >> and you write for today.com and you advise all parents, a child is a person, not a project. enjoy your time now. rest and relax. try to stay in the moment before it's gone. ease up. take it easy and responses from our today moms community, for the most part they don't even know how you can be so strong in this moment right now but really taking a look at and embracing exactly that sentiment, one mother even saying after a very long morning of toddler tantrums that have stretched my nerves to the breaking point, i think i was meant to read this. thank you. what do you want to say to parents out there?

    >> that woman said it perfectly. being a parent is really difficult, but i think the message that -- the things that ronan taught me about staying in the moment -- which is really difficult to do, are lessons that can be applied to anybody, not just with your children, but the people that you love, just trying to be present with them. it's not an easy thing to do. but ronan made it possible. that's what he did. he lived that.

    >> we appreciate you so much.

    >> thank you.

    >> and for reminding us what is so precious in life.

    >> thank you so much.

    >> "the still point of the turning world" so beautifully written. emily rapp , thank you very

By
TODAY books
updated 3/7/2013 7:03:45 PM ET 2013-03-08T00:03:45

Emily Rapp's baby boy Ronan seemed to have his whole life in front of him until he was diagnosed at nine months with Tay-Sachs disease, a fatal degenerative disorder. In “The Still Point of a Turning World,” Rapp tells the story of how everything changed. Here's an excerpt.

This is a love story, which, like all great love stories, is ultimately a story of loss. On January 10, 2011, my husband, Rick, and I received the worst possible news: that our son, Ronan, then nine months old, had Tay-Sachs disease, a rare, progressive and always fatal condition with no treatment and no cure.

A grieving mom's advice: Love purely, and take it easy

I had been worried for some time. Ronan was experiencing developmental delays, missing important milestones. I would rush home from work each day hoping he’d started to crawl or had said his first word. He was the same sweet, happy, gurgling baby—but that was the problem. He was the same at nine months old as he had been at six months. Our pediatrician suggested that we rule out any vision problems, so we drove from our home in Santa Fe to the pediatric ophthalmologist’s office in Albuquerque.

I sat in the examination chair as the eye doctor, a short, friendly man with black glasses, played cartoons for Ronan on his iPhone and flashed a series of lights in Ronan’s eyes. “He’s got good fixation,” he said. Ronan squirmed in my lap. Great, I thought, he can see. But behind this feeling of relief was a surge of panic—why, then, was he having these delays? I handed Ronan to Rick and sat in a chair nearby.

“Let me just check his retinas,” the doctor said, and hit the lights. I could see Ronan’s little eyes fl ash in the dark, and then Rick’s. The doctor carefully approached Ronan and peered into his eyes using a special light.

“Oh, boy,” the doctor said. “Oh, boy” was what my father had said when the doctors told my parents about my birth defect, which resulted in the amputation of my left foot. I gripped the sides of the chair and felt the floor drop away. The doctor flipped on the lights and said, “I’ve only seen this one other time.”

“What is it?” I asked, but I could see from his face that it was disastrous.

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“Hey, little guy,” Rick said, and turned Ronan to face him.

“Rick,” I said. My hands were sweating, trembling. “Rick!”

“He has cherry-red spots on the backs of his retinas,” the doctor continued. “I’ve only seen this one other time in fifteen years of practice. It’s Tay-Sachs.” He paused. “I am so sorry.”

“What’s that?” Rick asked calmly, but then he quickly had to attend to me because I was wailing. I had wet my pants. The doctor calmly called for a nurse.

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“I was tested!” I shouted. “I had the test.” I remembered the genetic counselor asking, “Are you Jewish?” and shaking my head. “I want the Tay-Sachs test anyway,” I’d said. Or had I? Had I, in this moment, instantly generated a memory to try to mitigate the present horror?

“I don’t know,” the doctor said uncertainly, and looked as if he might cry. I stared at him. “Did I?” I asked in a squeaky voice, but of course he would not know. He was the eye doctor, a man we’d just met, not the person who had administered the test. He shook his head and cleared his throat. I would later learn that the standard prenatal screening for Tay-Sachs only detects the nine most common mutations—those found among the Ashkenazi Jewish population—but there are more than one hundred known mutations. I would have needed to ask for a combination DNA and enzyme test or requested that my DNA be sequenced. I had not known to ask for either of these. I was told the odds of my being a carrier were “astronomical,” and both parents must be carriers for a child to inherit Tay-Sachs. Rick is Jewish, but by testing one of us, we thought we were covering our bases.

“My mom, my mom,” I said to Rick, gripping his arm and then taking Ronan from him. I clutched at my son, running my shaking hands over his head, his arms, his fat legs. “Little guy, little guy,” I said. He squirmed and giggled. I had the urge to swallow him, to try to return him to my body, where he’d be safe, but of course he’d never been safe, not even there. “Where’s my mom?” I was shouting now. “I need to call my mom. Where’s the phone? Give me the phone.”

“Well, what can we do about it?” Rick asked, glancing between me and Ronan and the doctor, digging in the diaper bag for the cell phone, but I knew enough about Tay-Sachs to know that there was nothing at all for us to do and that my life, the life as a new and hopeful mother, was over.

The doctor looked at the two of us. “No, I’m so sorry,” he said. “There’s no way to fix it.”

“They die,” I stuttered. I had the sensation of skin falling away from bone. I hugged Ronan more tightly. “They. Die.” I wanted to vomit, and my grip on Ronan was scaring him. I loosened my arms slightly.

“What?” Rick asked. “Surely—”

“They die,” I said firmly in a high-pitched voice, and this time he understood that I meant Ronan, that Ronan—our boy, our baby, our child—would die. The world was broken, and the three of us—Ronan, Rick and I—were falling into its mouth.

From THE STILL POINT OF THE TURNING WORLD by Emily Rapp. Reprinted by arrangement of The Penguin Press, a member of Penguin Group (USA), Inc. Copyright (c) 2013 by Emily Rapp.

© 2012 MSNBC Interactive

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