Grief and CHD Awareness

Lost boy

I'm not really sure what changing my photo on Facebook does to bring awareness.  I'm not sure what posting that same picture on this blog does either other than show off one of my favorite pictures of Riley sitting on my lap, both of us so bursting with love. But February is Congenital Heart Defect Awareness Month, so here I am on the last day of February posting my favorite photo enhanced with red and blue to make you aware of something or other.

And in the spirit of all that awareness, here are some things to be aware of:

* I feel angry a lot of the time. Angry at my husband. Angry at my kids. Angry at the dog. Angry at other parents. Angry at you for having living children. Angry at you for laughing and being able to go to parties or weddings or school events without the underlying panic. Angry that I feel so lost and unsure and insecure. Angry that when I have to pick my son up from a friend's birthday party that I end up crying outside, too scared to face the other parents inside. All of that makes me feel pathetic.

* On some days, I feel like I'm losing my mind. Like coo-coo crazy. I imagine that I could easily tip over some edge and end up in a mental institution with white walls and little cups of pills. There's a lot of chatter in my head about who is good and who understands me and who I can let visit my grief planet and who is just trying to lure me off of this planet to some other planet because it would be easier for them if I didn't live so far away in my crazy coo-coo planet where I really struggle with who I can trust. When I'm lost on my coo-coo planet, it feels like everyone is against me, trying to make me forget Riley. Trying to make me be normal because it would be so much less awkward. Fortunately, not every day is a coo-coo day.

* I don't like leaving the house. When I do, it's often related to grief--couple's therapy, grief group for parents, family grief group, individual grief group. Then there's visiting Riley's memorial in the hills near our house where I walk the dog. I do leave the house for other reasons, like teaching art and Little League games, but that is usually when the anger starts bubbling as I hear the chatter of normal people around me.

* I'm sad all of the time, even if I don't look sad on the outside. I owe that nugget of clarity to C, who was only eight years old when he uttered it.  I give him a lot of credit for summing up grief much better than most adults. Anyway, I feel seriously sad. All. Of. The. Time. Bags of baby spinach at the store make me cry. So does garlic. Pasta. Basil. Olive oil. Corn Flakes. Kids in baseball uniforms. Kids with rolling backpacks. Kids in glasses. Blond boys. Little kids with fat cheeks. Crying babies. 

* I can't understand how I could ever possibly lead a happy life. I sometimes think that this life here on earth is actually Hell. There is just so much suffering. Everywhere. Yet, we don't talk about it most of the time. Put on a happy face, go to work, visit friends. Talk about the ball game and not that serious stuff that keeps us up at night or makes us fantasize about that little bottle of pills we have in the drawer that could help make it all more tolerable. Only I don't know how to do that anymore. I don't know how to fold it up, tuck it in, put it away. So I wear it like soup I spilled down my shirt or like broccoli in my teeth--only no attempt to hide it. I don't know how to nor would I want to.

* I spend a lot of energy trying to figure out how to solve a riddle about why Riley died. If I solve it, it means he won't be dead anymore. So I use a lot of mental energy going through every single detail of his hospitalization, trying to figure out where it started to go wrong. How I could have made a difference, noticed something, asked the right question, or asked the wrong questions in different ways to come to different conclusions about how he should have been treated, with what medicines, with what therapies, with what tests. I will spend the rest of my days frantically rolling over every single thing until I figure it out. I sure hope that one day I'll be clever enough to solve it. That would be pretty amazing.

* Just like you talk to your kids, I talk to Riley. I'm the only one who can hear his replies.

* Riley sends me letters. When he sends them, they just appear in my head. And then I write them down on the wall under his desk in his bedroom.

* I fantasize about crashing my car. I can feel that urge sometimes. I'm just driving along and wonder what would happen if I pulled the steering wheel hard to the right or left. Then I could go be with him, wherever he is. But then I remember I have another son who needs me here on this earth. So here I am, even though that other thing feels really appealing, especially on the days when I feel coo-coo.

* Sleeping is my favorite thing. Riley isn't dead when I'm sleeping.

I sometimes fantasize about how my life would have been different if Riley had been born with a healthy heart. Not only did a congenital heart defect prevent him from having the luxury of growing up, he suffered too many times along the way. Too many tests, too many procedures, too many hospitalizations, too many surgeries. Other times, when I'm bargaining with the universe, I simply wish that he had survived this last surgery. Now that he's been dead 16 months, I wonder what he would look like, how tall he'd be. As an almost 13-year-old boy, he'd no doubt be changing, even though I'm convinced he'd still be sitting on my lap at every chance (see above photo). And since his surgery was supposed to give him more energy, I can't help but wonder if he would be able to go hiking or even just walk the few blocks home from school. 

One in 100 kids is born with a heart defect. Most defects are so minor that they will never need any kind of intervention. For the small percentage of those who do need help, there are simple procedures that can be done in the cardiac catheterization lab. For an even smaller percentage, there are surgical fixes that undo whatever nature messed up in the first place. Then there's even the smaller percentage who may need multiple surgeries and will never be fixed. 

Riley was the love of my life. CHD sucks. And now that you're filled with all of that awareness, let's be honest, shall we? It doesn't change a single fucking thing. 

Grief and being needed

My bedroom is where I work; it’s where I sleep; it’s where I grieve; it’s where I hide. This morning, it is also where I eat my oatmeal.

Chestnut blossoms

When I look past my bowl out the window, there is a wall of green. A few days ago, I noticed a purple bush splashing itself against that bristly green wall. In another few months, the chestnut trees will extend their blossoms like hands offering bouquets of pink petals.

Not long after eating, an email arrived in my inbox. It was a request from another mom, asking if I could help out during an art lesson at my son’s school. My first reaction was No, I don’t want to help out with another art lesson. I am at school enough teaching my own son’s class art. Why would I want to help out another class?

Being a volunteer art teacher for my son’s 4th grade class was not something I wanted to do, not this year, anyway. I had only showed my face at school two or three times when C was in 3rd grade. They were: the day C resumed school after Riley died, for C’s parent/teacher conference, and for his glee concert. That was enough; it was all I could manage in grief's wake. And on the first day of school this year, it was another anxiety-driven morning of me hiding under my hat away from the faces of other parents scrutinizing me (or at least that’s what it felt like). During “Back to School” night, I stood next to the door, so that I could bolt if need be. I have found that having an escape route makes going to these school things slightly less intolerable.

Dali's "Swans Reflecting Elephants"

But I taught 4th grade art when Riley was in 4th grade. It seemed appropriate to teach it again for his brother this year. So that’s what I have volunteered to do. On the day of our first lesson, I felt my body shaking as I puttered around the art room that feels a lot like the inside of a double-wide trailer. As I waited for the other volunteer parents to arrive, I stacked paper and opened plastic buckets with sketch pencils. Cold fingers reached for the school’s copy of Salvador Dali’s “Swans Reflecting Elephants” while nerves moistened the fabric of my blouse.

When the others arrived, I said hello. They said hello back. One mom gave me a long hug; the others just went about their business, asking about set-up and materials needed for the lesson. With the beating of my heart audible in my ears, I watched the clock counting down the last minutes before the children arrived and I would be on. It felt impossible to just pretend everything was normal. I had to say something.

“Hey,” I just wanted to thank you guys for being here,” I said as they covered the tables with bits of plastic cloth. “And I just wanted to put it out there that I’m feeling terrified. Terrified of the kids, terrified of all of you. Since Riley died, I’ve really struggled being around people; all days are hard in their own unique way. I’m doing my best, and please don’t ever take it personal if I’m short or seem angry. I’m just struggling and lost in grief.”

“Thank you for being here, Suzanne. And don’t worry about us,” one mom said. She wandered off to put sketchbooks on desks.

Another mom came over. “Did you realize that this is the same room we taught 4th grade art in last time?” I hadn’t, but she was right. This art room used to be one of the classrooms. It was Riley’s classroom and her son’s classroom when they were in 4th grade together. It felt fitting. A long inhale followed by a long exhale stabilized the off-kilter feelings I had after that realization. How had I not made that connection? It made me feel like Riley was there with me, helping me through. Tears threatened to streak my face at the memory of all the lessons I had taught in his class three years earlier.

Just then the kids walked in and lowered themselves to the floor near Dali’s painting. After introducing myself, I started talking about the artist and our exciting lesson in which they would make their own magical chimeras with oil pastels and watercolor paint.

Friendly 3rd-grade waiter at Scat Cat Cafe

The memories of that first lesson washed over me as I re-read the request to help out with the other class’s art lesson. What I realized--at least in this very specific moment--is that I’m wanted. Even in grief, I have something to offer. So often, I feel like a burden, that my grief is burden, that seeing me is a reminder that children die. And no one wants to think about children dying. It's such a downer. And so it’s easier if I’m not around, if I don’t make eye contact, if I don’t remind you of my dead son or dead children in general. I feel this way with my friends, with my acquaintances, with my family, with my neighbors, with the parents at school. I have felt like eventually everyone will smarten up and realize that this whole grief-thing just isn't going away, that it's a real drag, and that having a relationship with me just isn't worth their time and energy. And then they will go away, just like I knew they would.

Many months ago I had a conversation with the mother of one of C’s friends. She told about the teacher at her son’s preschool who lost a child. The teacher feared that no one wanted her around either. That she was unwelcome, unwanted. The parents reassured her that they did want her around, with her grief, her tears, her unpredictable emotions. I realize that’s how I feel, too. And maybe that’s why I’ve been neglecting my friendships, not responding to texts or invitations to get together. Because even though people are reaching out, I imagine that they can’t really want to spend time with me.

But here is an email requesting my help, even if it's only in this tiny, we-are-short-on-volunteers way. Perhaps, maybe, just maybe, I have something to offer after all.

* I found out later that day that the email had been sent to the entire class list, even though it looked like it had been sent just to me. No harm, no foul, but I was surprised at how it made me step back and analyze my relationships with my community.