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Tuesday, November 22, 2016

Grief and uncertainty

Riley in San Francisco
When Riley was alive, I always thought living with uncertainty would just become part of my wardrobe, like an old pair of jeans that I didn’t like but couldn’t seem to donate to the Goodwill. But it wasn’t like that at all. Riley’s medical problems were like razor blades under my skin. Anytime anything grazed against me, I got cut from the inside. I was always bleeding and the potential for pain was everywhere and constant.

When someone talked about their baby learning to roll over or crawl, in my mind, it was about how my son couldn’t do those things because mobility took too much energy for a baby with half a heart. When someone talked about their child going to preschool, I’d imagine germs fused onto toys layered with the saliva from a thousand toddler mouths. Then I’d stay home and away from others preschool-attending toddlers fearful for my son’s compromised immune system. When parents talked excitedly about the freedom that kindergarten would bring, Riley was recovering from his fourth and fifth surgeries; I was worried that he would never make it to that childhood rite of passage.

When it was time for flu shots, sobs from my boy were a reminder of the countless injections and blood draws that he endured as a routine part of his life. When friends talked of travel, a perimeter would be drawn on the map in my mind around the places we could travel without oxygen; all the others would be labeled forbidden and shaded gray.

Every baby and toddler I saw, I imagined, was perfect in every way and would be given the precious gift of growing up. Of annoying their brothers and sisters, frustrating their parents, and getting in trouble for staying out past curfew. I was jealous of the carefree ways in which their parents pushed them in strollers or held their hands as they walked up and down the grocery store aisles. Every middle schooler I saw roll past on a bike or skateboard may as well have been rolling to a mystical land where children’s bodies grew and were strong and had energy to transport themselves from place to place. Every single thing was crushing and exhausting.

And I know now that Grief is Uncertainty’s meaner, more tortuous cousin. While they seem to travel along a parallel paths, Grief’s razor sharp edges cut deeper, more often, and leaving purple splotches under my skin.

Only instead of being afraid of everything and fearful of what might or might not happen, grief cuts from the places we have been, the books we have read, and in beautifully mundane moments caught on camera, immortalizing the expressions of the face of baby who grows into the toddler who becomes the kindergarten and Little League-playing middle schooler--imagines that line the walls of my house. Each a reminder that he was alive, that he existed, even though I cannot go to a place where his face can rest in my hands and my cheek can sweep across his blond locks. 

And every single moment for the rest of my life, I will be aware of his absence. And I will wonder about the quieting ripple from his life -- all of the people who will never know him, never see his smile, never listen to his jokes, never marvel at his old soul who loved architecture and drawing comics and reading palindromes or The Far Side aloud to anyone who would listen.

Wednesday, November 16, 2016

Grief and rewinding

Riley's Matchbox cars
I’ve been to the hospital where Riley died exactly three times since then -- which is exactly three times too many. The first time was to visit another heart mom that I met a few days after Riley’s failed final surgery. Her son had also undergone heart surgery in October 2014. He needed to return for subsequent operation a few months later. I ignored the bile in my throat as the double doors slid open because I wanted to be a supportive friend. While I was there, I gave that little boy one of Riley’s treasured Matchbox cars. I remember how much Riley loved them when he was a toddler in the hospital. I had hoped it would offer that other little boy a slight distraction from the IVs and non-stop poking and prodding that goes with being in a cardiac ICU. The second time was to bring my kids to visit the Child Life specialist who had been a gentle coach to them while Riley was dying. They had asked to see her many times, so I finally found the mental ability to look up her contact information, and, well, contact her. While she lulled the kids with her soft and compassionate voice (and cool stash of art supplies), I wilted in the corner of the cafeteria and pretended that I was in some office cafeteria instead of that hospital cafeteria -- it didn’t work. 

This picture was part of the mental vortex
The third time was for my stepdaughter’s emergency appendectomy. And returning to that place with its lighted hallways and antiseptic smells for one of my children created a mental vortex of time and place and memory. The confusion was so beyond my capabilities. I wrote about its connection to my grief in the latest issue of Six Hens. If you've ever had the desire to rewind time, this piece is for you. 

Thursday, October 13, 2016

Grief and sleep

During the day, I don't want to be awake.
At night, I don't want to go to sleep.
I'm exhausted all of the time.

Thursday, September 29, 2016

Grief and the Second Anniversary

There are events on two upcoming days to honor and remember our son Riley Norton. Please join us!

October 20: Memorial Plaque Ceremony & Evening Lantern Lighting:

  • Memorial Plaque Ceremony:  Join us at the Central Middle School quad area to see a time-lapse video of last year's handprint memorial, check out Riley-inspired art, hear the Central orchestra, share stories, decorate a lantern for the Evening Lantern Lighting (see below), and be there when a memorial plaque is placed near the Central Riley Tree. Did you know that there was a Riley Tree at Central?? Everyone is welcome! The event starts at 3:30 pm.

  • Evening Lantern Lighting:  Light a lantern in your front yard in honor of the second anniversary of Riley’s death. Pick up paper lanterns and battery-powered candles at the Memorial Plaque Ceremony at Central Middle School (see above) *or* from 10/17-10/20 on Riley’s front porch. If you are unable to attend the Plaque Ceremony and cannot pick one up from Riley’s front porch, email Riley’s mom and she’ll drop one in the mail for you and your family to decorate at home.

October 30: The Riley Run:

  • The Riley Run will be a 5K walk/run community event around San Carlos in memory of our friend and classmate. We will start and end at Brittan Acres Elementary (Tamarack entrance). Everyone is welcome. The event starts at 4 pm. Proceeds from the $25 registration fee will be split between Camp Taylor and The Children’s Heart Foundation. Register by sending an email with the number of participants and t-shirt sizes to: Can't join us, but still want this year's t-shirt? Send an email to that same address with your request.

Thursday, September 15, 2016

Grief and my birthday

un-happy b-day
This time last year, I felt the words coming days before they arrived. I knew they would be well meaning, but insensitive words. I knew they would be flung my way with the click of a mouse or the tap of the send button from a poised pointer finger. The very idea of them coming made my brow furrow, my teeth clench, and my arms fold tightly over my chest. That was all before any of them arrived. 

The internet gives us such easy access to so many "friends." We get email messages and reminders to reach out to and offer sweet nothings. And so we do, because it's so easy. It's reflex... 

And then, as expected, they started appearing. One after the next, those words were posted again and again. As if them being posted repeatedly would make them true. There was the song sent via the FB messaging app. The personal notes. Those two miserable words again and again slapped up without really thinking what it might mean or how it might make me feel. Even though I've tried really hard along this journey to hear what people mean and not necessarily what they say. On this particular day, I could not get past all the happiness I was expected to be feeling. All the celebrating that I was supposed to be doing. All of it just made me feel so angry.

To try and stop it, I posted the following message
I can assure you that there is nothing "Happy" about today or any other day. I can assume that all of the well-meaning "friends" wishing such things upon me know nothing about me. Yes, today is the anniversary of the day I was born; it's also the first such anniversary since my 11-year-old son died. I know that most of you still feel the warmth of the sun on your skin, but I'm moving through the world dragging a mountain of sorrow so large that everywhere I go, its shadow pushes the weight of a minivan down on me. No, my house, business, or school wasn't scorched in a California wildfire. Yes, I have other children. Yes, I have health insurance to offset the cost of my weekly therapy appointments. Yes, I have food to eat, clothes to wear, a car to drive, a husband to hug, children to love, a dog to feed, chickens to tend. But I am not happy. I am in grief. I am heartbroken. I am suffering. I move through the days with a gigantic "WHY" and "NO!" screaming through every thought. There is nothing "happy" about any of that. For those of you who'd like for me to move on or get over it or enjoy starting sentences with the words, "At least...," we are not friends. On many days during the past year, I’ve slept all the hours that the sun warmed my house, shaken uncontrollably as stars twinkled through the night, filled prescriptions for sleeping pills, anti-anxiety pills, antidepressants. I’ve wanted to cut long lines into my thighs with sharp objects, lie naked in mud as the sky shook rain from storm clouds, crash my car. I screamed so hard that I burst hundreds of capillaries around my eyes; I chopped down the “Gratitude Tree” in my front yard in the middle of the night. Grief has slurped me into its hungry mouth and will be puncturing me with its fangs for the foreseeable future.
One year later, I feel slightly less angry, but not any less sad. This year, I will avoid reading social media for a few days so that I won't see those words splattered like well-meaning mud on my wall. Like a stalk of wheat in a field of sunflowers, I feel out of place in the world.