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Wednesday, October 22, 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! 

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

UPDATE: Donate to Camp Taylor in Riley's memory here:

Saturday, October 18, 2014

Lullabies for R

In the last few days while R has been on life support, friends and family have left him voicemail messages that we have played for him. Others have thought of songs that have been meaningful to R over the years and have played those songs for him. Two different friends mentioned "Fireflies" by Owl City. It was the theme song to so many Wednesday adventures with friends. And long before that, it was a song that R sang so often that I recorded him singing it. This recording is from November 2009. R was six years old.

As a side note, I cannot even begin to tell you the nightmare of opening one's laptop to find out that the world has decided that your son had died. To receive condolences for a death that has not taken place. In the future, please visit R's blog for accurate information regarding his journey.

Wednesday, October 15, 2014

Are you in there, sweet boy?

Can you hear the way I hold my voice steady when I speak to you? Can you hear the way I muffle the sobs when I say I love you? Can you hear me choke on my words when I talk about what we will do when you come home? Can you feel my fingertips on your arm? Do you notice when I put a cushion under your wrist?

Are you in there, sweet boy? I look into your gel covered eyes only half closed from sedation. They ooze and are swollen from fluid flooding your skin like a balloon overfilled at the tap next to the trampoline in our yard. I push my fingers through your grubby hair and imagine that you will open those lids to see me looking at you.

We told him the surgery would make him better.

My sweet boy, I have wondered if you can hear me under the tape, under the anesthesia. My sweet boy, I have wondered what you’re thinking as you are poked and cut and pressed on by the ultrasound technician. My sweet boy, I have poured love over you with every breath as you lie motionless on that hospital mattress. Even as you lie motionless, I feel your love and memories of your smiles flood me. Memories of your laugh help me inhale. My sweet boy, how I have loved you every day that you have shined your light in my life. Every day since April 2, 2003.

I have to believe that you are still dreaming of days without medicine, of flying on airplanes without oxygen, of climbing to mountain tops with energy. My sweet boy, my sweet boy. 

Sunday, October 12, 2014

Work heart, work

There are no days, only nurses and shift changes. There are no hours, only epinephrine doses and drainage. Sometimes black spreads beyond the shutters; sometimes there is blue or gray, then black again.

Guard dogs
I cannot remember what I did before Wednesday, before the sticky floors. I cannot remember before the darkened stairwells took me to breakfast and lunch. I cannot remember walking my dog in the hills. It's hard to believe that I was so afraid of that bottle of tiny white pills, those sweet pills that slow twitching and soften muscle contractions ripping through my legs. I cannot remember sucking the fresh air into my lunch; my lungs fill with recycled air from hospital filtration systems. I shiver in my jacket as your naked frame lies motionless on the bed under a tiny cloth.

Work heart, work.
Work kidneys, work.
Work liver, work.

My voice whispers into his hair and his ears and his wrists when I want to shout at someone or something. There is no one to shout at. There is no one to blame. But I understand why he blamed me for growing him incorrectly. I blame me too, even though I didn’t grow him incorrectly on purpose. My pocket bulges with crumpled tissues.

His stretched skin is filled with fluid, so painfully stretched, so full of fluid. How can I wake his kidneys besides pleading with them as I hold his hand. I smooth love over him as I graze his lovely skin. I cuddle him in my mind and relive all the hours we sat in a rocking chair in his bedroom as I pet his soft hair. I pour love into his open mouth, lips spread from the breathing tube.

Work heart, work.
Work kidneys, work.
Work liver, work.

A giraffe holds his ventilator in place. His penguins support his legs. His guard dogs perch at the end of his bed. Who can they guard against? It has only been four days. His heart needs to make peace with its new ventricle.

I am only a mother. I am only a mother. It feels as though I cannot bear many more days like this, even though this pain, this helplessness isn't new. Take my heart. Take my kidneys. Take my liver. Hear my whispers. Feel my love. Take all you need from the love I have to give. If my love is the medicine to heal you, it feels inadequate.

Work heart, work.
Work kidneys, work.
Work liver, work.

(To follow R's medical progress, visit his blog here.)

Friday, October 10, 2014

The things we get used to

I hate to imagine that I've become somewhat used to this whole hospital and surgery malarky, but I've become somewhat used to this whole hospital and surgery malarky, even at a different hospital with different waiting rooms and different cafeteria food. It feels somewhat normal to see my son paralyzed and under deep sedation with a plastic breathing tube coming from his mouth like an awkward straw. It's somewhat normal to see the IVs in his feet and arms and neck. It's somewhat normal to see drainage tubes dangling from his torso and attached to briefcase-sized boxes under his bed.

My familiar vantage point
What I hadn't gotten used to was the waiting, the waiting without updates, the waiting in which you begin to imagine that no news is definitely not good news. He was in surgery for more than 12 hours yesterday and I didn't start to panic until after nine hours. Because the surgeon had told us nine hours at one point, I'd latched onto that number. And during that time, I meandered around the hospital and slept and ate and doodled and chatted to the assorted family members here. It went by quickly without as much as sob or gasp. Beyond that, I fidgeted, rocked, sobbed, and could picture the dark place where my baby lay on a table, cold and naked.

But overall, three hours is short in my lifetime. And now we are on the other side of this dreaded, but successful operation. Things are calm, and I'm grateful that he's still sedated, still pumped full of pain medicine. It's when he starts coming back into his body and feeling the trauma of open-heart surgery, then it will be hard again. His howling voice, my helplessness. But for now, I settle into the chair at the foot of his bed. This familiar place, this familiar vantage point and marvel at what we can get used to.