TODAY | March 08, 2013
>>> 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?
>> 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 .
>> 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