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Sunday, October 26, 2014

With every exhale, there is love

How can I possibly sum up all that you meant to me with the 26 letters of the alphabet? My mind races with how to assemble them accurately to say what I’m feeling.

A happy life
Pain is simple. It is easy, effortless. I open my eyes, I throw blankets back, I look at every object in my room, my house, and I find you. There are the pictures taped to the mirror on my dresser. There are the necklaces you made hanging around the base of the lamp on my side table. There are the hidden Christmas gifts that fall from the closet as I reach for the drying rack. There is the book you were going to read when you came home. These lovely, simple things are painful because they flood me with all that was, all that ceases to be.

Dark is easy, too. I think of how you walked out of school on a Tuesday, and as they tried to fix you, they destroyed your bit by bit. With their medications, they cut off the circulation in your legs, your hands, and I watched bits of your body die days before your heart stopped. I think of the packet of ashes waiting for me to pick up from the funeral home. How can you not exist anymore? How can your body—the one that I held and kissed and bathed and nursed and marveled at and read to—be removed from this earth, from my house, from this town, your school. The clothes you wore to the hospital sit on the step stool in the kitchen. You are here and you are gone.

There is also light. Every time I look out the window, I see you. You are in the shaking leaves on the London Plane in the garden. You are in the blades of grass forcing their way through our dry earth, browned by drought. You are stretched across the flat pads of the Manzanita bushes that dot the hillside where we walk our dog. You are in the fronds of the pineapple palm trees that line our streets. You are in the stems of the flowers standing in the vase on the patio. You are the bougainvillea branches stretching toward the sky. You, my boy, are everywhere. You shine through the front windows even though I’ve covered them with dark curtains. You flood my heart with light because you were light. Beautiful resplendent light.

There is also love. Within the pain, the dark, and the light, is love. Your name is love whispered into my pillow. Your photos are love flooding my eyes. As I lie on your bed in the dark, I inhale the scent of your blankets. It is love. Love is everywhere, you are everywhere. And nothing I can say or write can make you whole or bring you back or undo the wounds. But I have love. I have your memory.

You beat in my heart, you move through my veins. You flood my lungs and I breathe you back into the world with every exhale. 

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.

Thursday, October 09, 2014

"Things are going well"

R distracted with SF Giants' highlights
We just heard that "things are going well," but doctors don't have an estimate for when they'll be done. For those of you interested in the play-by-play hospital updates, please visit R's blog. At this point, he's been in surgery for more than seven hours and we're guessing it's going to be at least a few more hours.

Wednesday, October 08, 2014

Blood, sweat, and tears

It wasn’t until I picked him up from school Tuesday afternoon did I realize that it was his last day of school until January. As he walked across the street with his buddy, I heard his friend said, “Well, see you next year, I guess.” And then it hit me that, yes, it was his last day of school. Intellectually I’ve known it was coming, but I hadn’t anticipated the realness of it all. I spun around to see if anyone else had noticed the moment, felt time slow down. No one had. It was just in my head. I told him he didn’t need to do his homework. For that, he was grateful. There should be some perks.
What followed Wednesday was 10 hours of poking and prodding for his pre-op appointment. It was strange to be walking the hospital corridors and having lunch in the cafeteria just like normal. It was anything but normal. Casually giving six vials of blood, casually peeing in a cup, casually having your heart examined in a darkened room for 90 minutes, casually capturing the rhythm of your heart on a computer with the help of 16 wires glued to your body. All so that the very next day, you get to arrive to the hospital at 6:15 am and willingly hand yourself over to a talented group of doctors who will change the course of your life—hopefully for the better.
After all of that, we hosted dinner for 10 in our backyard followed by key lime pie—R’s favorite. Then it was bedtime. There were tears and vomit, nerves from the day finally catching him and taking over. He was most upset that his favorite blanket was not available to comfort him through the night. Fortunately his three siblings were wrapped in their sleeping bags in his room to keep him company.
And then last night at 11:45 pm, I woke R for a private picnic. After midnight he could not eat or drink anything, so we took advantage of the last minutes of the night to squeeze in some calories. We’ve had middle of the night picnics before each of his procedures and it’s quite sweet to share a few moments when the world is quiet and asleep. Hopefully both of us were able to fall back to sleep afterward.

Tuesday, October 07, 2014

Stop flirting with me

Hey you, in that sleek shade of orange…what are you doing over there across the bedroom when I am way over here all alone? I can see that you’re trying to get my attention. You know you want me to come over there and wrap my hands around you. You know you want me to put you between my lips…

People, I’m not sure what you were thinking, but I’m talking about a bottle of anti-anxiety medicine filled with little white pills that’s so clearly flirting with me from my dresser over there. I filled the prescription yesterday. And I feel a little scared that I have it, that I went to the doctor and asked for it, that I filled it, and now want to take one. I understand that’s the whole point, but because I want to take one, I suspect it’s because I’m in need of taking one. But I’ve had that other safety pill hiding in my closet all these years. And I saved that one, solitary pill because I feared that there would be a day worse than any day thus far and I would need it. I guess what I’m saying is that I hate that that day has come. Fuck.

Wow, did you hear it? That shattering sound just then? Sorry about that. Just had to throw a rock through the front window of the fake life you imagined I was leading. The one where I’m smiling and driving my kids to baseball practice and playdates. The one where I dance through Trader Joe’s and sing along with their soundtrack of classic 70s songs and 80s Brit pop. That life is peachy keen. Now don’t get me wrong. I do those things. You did not see my doppelganger lip-syncing to Rick Astley. But all is not peachy keen.

For all of you who’ve imagined that I am just some awesome woman living an awesomely perfect life with a sexy English husband, four kids, a dog, and five chickens worthy of envy or dislike, my life is imperfect and entirely fucked up—just like yours. And yours. And yours. Sure they’re fucked for different reasons and there’s a spectrum of shit that can fuse to the bottom of your shoes and get dragged around indefinitely as you stumble around Trader Joe’s singing. Mine involves splitting my son open a bunch of times. Yours may be about your ex-husband and custody arrangement. Or maybe it’s about your selfish mother or your alcoholic dad or your dead wife or your cancer or your toenail fungus.

As I was leaving my dance class last night, a woman told me that she used to dislike me because I was a writer. I was an at-home parent. I was younger than her. I was “prettier” than her. And that I danced with all the guys she wanted to dance with. And she disliked me for all of those reasons right up until I opened up about my son. Then it became clear that I wasn’t leading a life of envy. And I totally get it. What she told me is so messed up and so true because we create stories for people. We fill in the blanks. We think we can tell everything about someone by looking at them. But we can’t.

So here I am fantasizing about the drugs given to me by a doctor yesterday. Therapist Friends told me that in her field, they call it Vitamin A. That sounds a lot less harmless than Ativan. Now if only it didn’t feel quite so profound. Not taking one, not taking one, not taking one...What does it mean if I take one, you ask? Nothing. There is no medal to be won while my son is in the hospital. Just hating that I’ve arrived in this dreadful place.

Sunday, October 05, 2014

Can you please help?

This is me looking forward to mandatory cookies!
I reclined in a squishy chair and was covered in a warm blanket. There were no children; there was no laundry; warm coffee and a plate of cookies was in my near future. I would have preferred softer lighting, but overall it was great place to rest. Had I closed my eyes, I suspect I would have easily fallen into a mid-morning nap. When I was all done, a swath of pink was wrapped around my arm. Where can you have this kind of treatment, you ask? At your local blood center, of course!

R will need at least four units of blood for his surgery on Thursday. Our hope is to replenish the supply, so if you are able to, please go to your local blood bank and donate in his honor. No, your blood won't be used during my son's surgery, but it will help someone else in need. 

Once you donate, please post here so that we can see how many pints we were able to rummage up in his honor. Can you spare an hour and a pint? Go on, you know you've been wanting some juice and cookies!