Tuesday, October 21, 2014

Eleven and a half

Despite the very special team of doctors and nurses helping him, Riley died yesterday afternoon, Monday, October 20, 2014. I am heartbroken for my family and I am heartbroken for all of the people, especially the children, who know Riley. I wish I could scoop them up and protect this from this horrible truth.

Hopeful with siblings before surgery.
Riley went into surgery scared, but hopeful. He looked forward to running, flying on airplanes without oxygen, and going to the mountains--something he could not do because of his low oxygenation. I like believing that he died still feeling hopeful for those things, and I imagine him running and running and running. I feel grateful that he died while being soothed by his mother, father, and two bonus parents and not in an operating room. He is no longer in pain, no longer suffering, no longer struggling. For this I am also grateful. Afterward, I noticed a vertical beam of light pressed against the wall near the closed blinds at the end of his bed. He is free.

We know you all want to do something and we appreciate your love and support. In lieu of flowers or other gifts, please consider donating in Riley's honor to Camp Taylor, which is a free summer camp for children with heart defects and their families. Also, please donate blood, not just now, but again and again. Riley lived as long as he did because of the generous donations of countless, nameless, and selfless individuals. His corneas will be donated to help others.

At some point, there will be a celebration of Riley’s life, and we will post details here. In the meantime, I wanted to share a poem that Riley wrote last month for a class assignment:

Gracious Green
By: Riley Norton 9-16-14 

Do you know what my favorite color is? Green! 
He is: nature; earth’s greatest gift, 
the leaves that sometimes drift, 
an Exit sign glowing on the wall, 
and a brand new tennis ball 

My color sounds like the wet grass when you step in it 
He tastes like a salad with some vinaigrette 

My color feels like a warm, soft pillow 
Green is the smell of a tree called a willow 

Green looks like a sour apple ripping on a tree
he is someone's favorite color and that someone is me! 
IS YOUR COLOR GREEN TOO??? 

Thank you for loving him, and us, through the years.
Suzanne, Ken, and family

UPDATE: Donate to Camp Taylor in Riley's memory here: http://www.firstgiving.com/fundraiser/rileynorton/donate


64 comments:

deb did it said...

I have no words other than " fly free Riley "

Janet Isserlis said...

so very very sorry. love to you all

Perry Mizota said...

I am so sorry, Suzanne, Ken, and the rest of TeamRiley.

Unknown said...

Love is the most powerful force in the universe ... more powerful than death. The love surrounding Riley and his family is awe inspiring

Lynn McG.-E. said...

I am so very, very sorry. My love to you all.

Unknown said...

I prayed so deeply that this would not be the outcome for Riley. For Riley's family. He is truly an angel who will be in our hearts forever.

swamps said...

my color is green, too. i send you all my love. hugs.

Unknown said...

What a gorgeous poem. Love to you all. And we will donate as you suggest. Love Barry, Jen, Riley and Gabe.

Don Loeb said...

Ken, I'm so so sorry and utterly speechless. Our thoughts are with you and your family.

Anonymous said...

You are amazing to communicate this loss with such love, light and hope. Riley's poem is beyond lovely and I just wish he could have had more time. Sending big hugs to you, Ken and Carter.

Karen, Peter, Max, Milo and Felix

Chuck W. said...

So, so sorry. You were both fighters. Love to all, peace to all.

Anonymous said...

Your journey with Riley has been touching and inspiring. Thank you for sharing your strength and sorrow with all of us. My deepest condolences. Be free Riley!

Musings from Me said...

I'm so very sorry for your loss. Riley sounds like a most amazing kid!

Unknown said...

Such a beautiful boy, a lovely spirit, and a gifted writer! What a great poem!! I can see now where that wonderful mixture comes from, was concocted, and nourished -- in the love and comfort and support of his parents and family. Green is now my favorite color. And I envision the green of the baseball diamond where we first met Riley. I see him there now, playing 2nd base, glove in hand, waiting for the pitch, ready to scoop up the grounder and fire to first. He and you are in our hearts. Love, Alessandro, Isabella, Michele & Christopher

Anonymous said...

Love and peace to you all. Our hearts are with you, Brian Tina Colin and Gavin

louisgray said...

So sorry Ken. We're all pulling for you and your family. The fight continues in a new arena. Hugs and thoughts and all things virtual to give you comfort the physical world cannot.

califmom said...

I am so very, very sorry for your loss.

Allison R said...

I am heartbroken for you and your family, Suzanne. Thank you for keeping us all informed and updated, with your beautiful words, through your and Riley's blogs. May he rest in peace.
xo

Unknown said...

I am so sorry to hear. I am still praying for all of you. God will take good care of him for you.xoxo

Calypso Communications said...

I have been checking this blog every day, multiple times a day, always with you all on my mind and in my heart. I am so sorry for your incomprehensible loss. I love the poem he wrote. You will all continue to be in my heart and prayers.

Anonymous said...

Deepest condolences. We are heartbroken and you are all in our thoughts. The Samadani Family.

Unknown said...

So much love. How graceful you have made this transition for Riley, family, friends. His spirit truly soars. So many hold you and him In our hearts now.

Anonymous said...

He runs in the hills of the father with grace and joy.

Anonymous said...

We were deeply moved by your posts and can not possibly convey in writing how saddened we are for you and your family. With heartfelt condolences, Lisa, Danny, Paddy, Lucy and Ruby

Anonymous said...

He is running across the mountain tops with the sun shining and a thousand-watt smile! Riley, you were one in a million!

Angela Naughton, 5th gr teacher

swag said...

Thank you for touching our lives, Riley. Rest in peace.

Melanie Koller said...

I am so sorry for the loss of your little man. We have never met, but share a similar story as we just lost our 10 1/2 year old to heart disease among other things a month ago. I will continue to pray for your family and his classmates too. I was very worried about AJ's friends and still do. I pray for your strength in the coming days and months.

Anonymous said...

Suzanne, Ken and Family, I am so heart broken over this news and prayed and thought of you often hoping for a different outcome. May Riley never feel fear again. He is an angel who will forever be remembered. My deepest condolences - Imad Succari & Family

Vish said...

as much love as we can possibly send your way. sorry brother.

Anonymous said...

Dear Suzanne, Ken and family,

We are so devasted and saddened for Riley's passing.
This community is here for you and your family and for our own children who knew and loved Riley. May we all come together and mourn as a community.
Riley will always be in our hearts.
Love, The Lerner family

Anonymous said...

I don't know you or Riley, but I have been praying for Riley since I first saw your blog a few weeks ago. I am so very sorry for your loss. You are an amazing & strong woman, Suzanne. I will continue to hold Riley, you & your family in my heart.

Anonymous said...

We are heartbroken. Riley touched all of us. Thank you, Suzanne, Ken and family for sharing him with us - what a gift to have known Riley. Much love to you all.

xo
Julie, Erik, Ellie & Jack

Anonymous said...

Riley was in my son's class which is how we got to know him-- what a sweet, sweet boy. Our hearts are broken for you. We are so sorry. Thank you for sharing his journey with us. I am in awe of your strength.

Rick Klau said...

Carter, Suzanne, Ken, Summer, Adam, - we are holding you in our hearts, and will never forget Riley. With love,

the Klau family

Anonymous said...

You are missed, sweet boy... What a gift it is to have known you.

All my love,
Shelli Murphy

Jennifer Gray said...

My color is Green too. I am so sad and speechless. Our hearts go out to you all.

Jennifer and Jens

Nadia Ferry Yassin said...

I am so sorry... no words from northern Sweden, so sad ♡♡♡♡

laurie craig said...

Suzanne, I am so very sorry for the loss of your brave and beautiful son. I am thinking of you, Dan and your entire family. May memories provide some comfort during this most difficult time.

jeff4citycouncil said...

My heart is broken. I am in tears right now. I know Suzanne and Ken and Carter and everyone else who knows and loves Riley will endure.

Anonymous said...

Such a terrible loss. We'll always miss his positive attitude on the baseball field. Our hearts and prayers go out to you. Brian, Kim, Derek, and Jenna

Julie said...

Dear Suzanne, Ken, Carter and your beautiful families, We are just so very, very sorry. We will never forget Riley. Love, Julie and Scott

Jude Lawrence said...

I am so, so sorry. He will live on in so many people's hearts and memories. You are all in my thoughts. I send my love to you all.

Anonymous said...

It's not the years in your life that count, but the life in your years! - Abraham Lincoln

Melissa Kraus said...

Suzanne and Ken,

We are deeply and profoundly sorry for your loss. We are holding you all in our hearts.

Melissa and Joe

Unknown said...

My family and i send our prayers and positive vibes your way. Im terribly sorry for your loss. Your a strong momma to lose someone very special and still keep the world updated. Rileys name will live in my heart forever now. I wish i could have been there to introduce myself and let you know that we are in this with you. May Riley have a safe journey Back to the lord to watch over us in his new "green"pastures.

Unknown said...

I have no words for this - so very sorry for your family...

Nepperess said...

So saddened by your loss. Your family is in my thoughts.

Anonymous said...

I'm giving you a warm hug. Looking back at when my mom used to hug me and hold me when I was a boy. Those moments live on forever, you can feel them. Love to you and your family

Anonymous said...

I don't know you personally, but met you and Riley when my grandson was in the hospital having the same surgery at UC Davis. I don't pretend to know the pain you are feeling, but pray that the goodness and spirit of your sweet boy will continue to bring you joy. You are his mother for now and forever and your family will always be in my prayers. I am so very sorry for your loss and if I could take any part of your agony onto myself, to lessen even a moment of it for you, I would gladly do it.

semilshah said...

Dear Ken, I do not know you, but I know of you from your colleagues and have been following on. From your friends, I have gathered they care for you and your family deeply, and I wanted to send a short note to extend my condolences to you and yours. -Semil

Anonymous said...

We miss him so so so much. He was so nice. I can't stop crying it's impossible. I wrote a story about him I wish he could read it. It feels so unrealistic. Love, Kadence

Anonymous said...

I miss you a lot Riley. I'll always have you in my heart. I will always remember you Riley. It's going to be hard for me this week xxxxxxxoooooooxxxxxxxxoooooo love you Riley, love Baden xoxo

Kim said...

Sending love to Riley and his incredible family. Riley was a sweetheart who was so kind to our littles. We are blessed to have known him.

-Kim, Derek, Ellie, and Matteo

Anonymous said...

I went to school with Riley. My name is Maya P. and I am in 8th grade. I've never met Riley but I have taken this really hard. I can't stop crying! I can't even imagine how bad this is for you and I want you to feel loved because you are. Everyone is rooting for your family. I am deeply saddened. I am so sorry.

Unknown said...

Ken my heart ached reading this. My deepest condolences to you and your family. May Riley's spirt live forever in your hearts.

Anonymous said...

Our entire family is so sad. Riley was a truly sweet and special boy. May his memory be a blessing. You are a special mom. May G-d grant you strength in the days, months, and years ahead.

Anonymous said...

So sorry to hear, what a beautiful poem he wrote, he has made the world a better place. May he rest in peace now. Posting as anonymous, as not sure how to post otherwise but my name is Wendy and I live in Ontario, Canada.

Anonymous said...

I just started following Riley's story a couple weeks ago and have been checking in everyday to see how he is doing. I am so sorry for your loss but you have encouraged so many others with your incredible strength.

Kate Potterfield said...

I am so, so deeply sorry. The love of this family and Riley's sweet, strong spirit have come through on these pages. I will keep you all and Riley in my heart in the time ahead.

Eric Colson said...

The earth was so blessed to have him.

Anonymous said...

I loved Riley's poem, what awareness and spirit. Blessings and prayers to Riley and all his loved ones.

Anonymous said...

It's easy to say that Riley was an unlucky boy. So many things that could have gone wrong did go wrong. But when I read the beautiful words on this blog, I can't help but feel that Riley was incredibly lucky. The love for him is so strong it is almost tangible. Things did not turn out the way they were hoped to turn out, but nonetheless, Riley was lucky -- he had the most loving family a child could ever hope for. You all have put more meaning and more beauty into his eleven and a half years than most people experience in 80, 90, 100 years. This child was loved, and he knew that.

I am so sorry you lost your beautiful boy.

Anonymous said...

I found your story through a friend's posts. Thank you for sharing your personal, family story with us. He's touched so many, even strangers. I love his poem and painting. What a special gift he was to this world. May you find strength in each other and continue to honor him in ways that bring you and others joy.

Steve Thompson said...

How heartbreaking, and I am so sorry. He was lucky to have been so loved every moment of his life. I met Riley at some of Cassidy's birthday parties, but it has been years since last time I saw him. He was a very special little man, I wish you strength getting through this, cherishing your wonderful memories. I wish he were still here, but the place he is...it's pretty darn good too.