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Emily Rapp's Story: Parenting a Terminally Ill Toddler

Emily Rapp's Story: Parenting a Terminally Ill Toddler

Emily Rapp's Story: Parenting a Terminally Ill Toddler

We cannot imagine anything harder than parenting a terminally ill child. Writer and mother Emily Rapp's recent essay, published in The New York Times, is a rare peek into that world. Rapp's toddler son, Ronan, was born with Tay-Sachs disease, a rare genetic disorder that has no cure.

She writes, "This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal....Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."

Her words will make you cry and make you feel grateful for your children's health. They also powerfully recast a challenge that all of us share: raising a child with fierce love, only to one day let him go. "This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is."


Read Emily Rapp's essay, Notes from a Dragon Mom (The New York Times)

Do you know anyone who has had to bury a child?

Image Source: via Emily Rapp / The New York Times

LuzGallagher LuzGallagher 5 years
My heart goes out to them. Look at that beautiful little boy, that face. It must be agony. I've never prayed so hard until after I had my son. I pray whenever I think about my son which is constant. : ) God be with this family forever and always.
ElizmareJacobs ElizmareJacobs 5 years
I am a mother to 4 amazing children. My son(6) ia autistic and my 2 youngest children(1 & 3) both have Cystic Fibrosis. I love what Emily Rapp wrote. It is extremely sad and cuts deep into a persons soul, but helped me alot. I feel the same. A 15year old CF lost the fight a few days ago and I couldn't help thinking "when is it going to be us standing next to our child's grave". My heart and prayers goes out to all parents that has to see their children suffer from any form of desease or disability...It kills a persons soul to watch them suffer, knowing there is absolutely nothing you can do to stop it. Just take it breath by breath enjoying every second you get to share with them.
MariaPruett MariaPruett 5 years
I have family that lost their 8 year old recently, God took him. Home because his job here yet short but was done. He touched more lives than the average adult who whitnesses for God. I pray that anyone who goes through this at least knows God. Yea there are horrid things like this that happen but there's always a good side something good that comes out of it. We may not see his master plan at that moment or when we want to but God does! He's what got this family through it and he will anyone who calls to him.
BettyLopezDiaz BettyLopezDiaz 5 years
I had a coworker who burief his forteen month old son who had leukemia. So sad.
MichaeleTurk MichaeleTurk 5 years
I lost my son at the age of 3 in a house fire, he lived 4 1/2 weeks but died of infection. My husband as well blamed me as did I for a long time, it almost split us apart. Luckily we have two other children that we had to love and nourish, so that helped. It was the hardest thing I have ever had to do, and my heart goes out to those who have to go through it. A parent is not supposed to bury their children no matter how old they are. I feel blessed though because I was there the day he came into this world, and I was with him when he left. It was the most heart wrenching and beautiful experience of my life through. So many people loose loved ones and don't make it to the hospital or can't get to them before they pass on, so I feel very lucky that I got to be there. Part of me died that day, but the experience has definitely made me stronger. R.I.P. Markus, I love and miss you everyday.
jenniedaniels jenniedaniels 5 years
To Mckenzie Morales in same cities or states, if it hasn't been documented that a child has had medical problems before death, it usually is treated as a homicide until the ME report is in. that happened to a friend of mine out in vegas. her 2.5 month old boy died from sids in 2000.
sarahnicoll29249 sarahnicoll29249 5 years
My son was very sick at 2 months old and put on life support. He was in ICU for 11 days and pulled through. He is now a healthy 10 month old and o thank God everyday for his and my other son's health. I can't imagine the pain of losing a child. Thank you for sharing your story, it reminds us to not take one day for granted.
AngelaMiranda70432 AngelaMiranda70432 5 years
After reading this very couragous and caring mother's story I felt grounded...I planned a birthday party for my three year old for tomorrow and all week worried about getting the Dora cake she wanted, finding the decorations she'd like, making sure everything was ready. Really???!!!! I appreciate her health and my 9 month old's health, that is what is truly important. I cannot imagine the loss of a child, my heart does go out to all the parents that have lost a child. Emaily has the wisdomto appreciate today and all the important things; I feel ignorant suddenly...
CindalScott CindalScott 5 years
A good friend of mine had her baby 12 weeks premature. He fought for his life for 9 months before he grew his wings. Saddest event of my life. I sang at his funeral, and seeing the pain of a mother like that changed me forever. It was the hardest thing I have ever been a part of, and I can't even imagine if it was my child. R.I.P. Mason
TonyaBarnes TonyaBarnes 5 years
I have a child with Cystic Fibrosis and know that our days are limited and just make the best of today each and every day. I know that God does not cause these tragedies but that they are the result of the imperfect world we live in where disease and tragedy are prevalent. I have learned that reusing that He can and will turn our every despair into his glory if we allow it. My son has taught me that in his 3 short years he has touched so many with his spirit. God is good, even if our world is imperfect.
CoMMember13630787153361 CoMMember13630787153361 5 years
my heart is racing at the thought of losing a child my heart goes out to anyone who has lost a child,so sorry it must be heart breaking.
MckenzieMorales MckenzieMorales 5 years
I lost my first born son when he was 6 weeks old back in January of 2009. It was and still has been the hardest day of life. He passed of SIDS which is another way of saying they don't know. What mad eit harder was when the police cam eand blame was automatically pointed at me. That day couldn't have been any worst but it was when my husband also pointed his finger at me and I had no one to be by my side. When I became pregnant with my daughter it was hard. lets just say my nerves were shot and I jumped at every cough, burp everything. She is 2 now and in great health. I am now preganant with another boy so lets just say I am nervous and scared. My heart goes to all of those who have a lost a child. The pain will never go away but it will get easier.
lisasimmons95662 lisasimmons95662 5 years
raecardwell raecardwell 5 years
my sister died at 16 years old, the grief and the pain my parents went thru was terrible, it nearly split them up and my mum is still on strong anti depressants.
HeidiFitzpatrick39216 HeidiFitzpatrick39216 5 years
I am so sorry you and your family are going through such a horrible time. I to have 2 girls and I thank God for them every single day. I know that God does not make mistakes and that bad things happen to good people, I will add you all to my prayers. God Bless.
DorothySkirzenski DorothySkirzenski 5 years
So sorry. You are so brave! Thank you for your story. I will hug my kids more now....because ..we just never know what God has planned!
MichelleLopez85216 MichelleLopez85216 5 years
I couldnt even imagine the pain of losing a child I have two boys and I would do anything four them... My thoughts and prayers are with u
LYNNstrange LYNNstrange 5 years
i had to watch my son carry his baby daughters of 6 weeks old coffin down the aisle of the church to be cremated it was one of the hardest things ive had to see him do ,my grandaughter had edwards syndrome we miss her so much . and my 7 year old grandson has duthene muscular dystrophy x and people tell me there is a god x
DoraLoCascioWiggs DoraLoCascioWiggs 5 years
My heart goes out to this mother and all those parents that have to bury their children. I can't imagine and don't wan to imagine. I have 2 small boys of my own and pray that they out live me by many many years.
ErinHersey ErinHersey 5 years
We were told to take her home and enjoy what time with us she had left.she passed away at 14 months old.going through that changed me in soo many ways.i stopped believing in god,cause why would someone soo gracious make my baby suffer.i cant believe that sumone ppl worship would do that to an innocent child.
CoMMember1362728310495 CoMMember1362728310495 5 years
I also had a child who had Tay-Sachs disease. She lived to be almost 5 years old. She has a twin brother who was not affected by the disease. Thanks for sharing your story.
LaurenKupst LaurenKupst 5 years
My best friend had to cremate her daughter @ 14 months old because the child's paternal grandmother gave the child morphine and caused her to overdose... Were still waiting for her day in court so little Leanna can finally have justice
ErinHersey ErinHersey 5 years
I seriously feel for this mother.our daughter was born severly ill at full term weighing only 4lbs 1oz.they did soo much testing on her and didnt know what was about 6months of age and most of our kife in the hospital
PaolaBianchi PaolaBianchi 5 years
My cousins lost their 14 month old son, and it was, will always be one of the saddest days of my life...I believe there is nothing worse than losing a child, especially when they are so young and innocent
KimElliott61572 KimElliott61572 5 years
My aunt and uncle had to bury their son when he was 3 days old. Granted he was not terminally ill, but it is still hard to lose a child like that. He died under horrible and tragic circumstances. I feel bad for anyone that loses their children.
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