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 another death

Like getting ready for a date, I drew black lines over my eyelids, dabbed mascara to darken my fair lashes, and pressed a few curls into my hair. I slipped my feet into black heels. Gray slacks encircled my legs and a black blouse hung around my torso. As I assessed this dressed-up version of myself in the full-length mirror near my closet, I didn’t recognize my reflection. “You can do this,” I said to the woman starting back at me. She didn’t reply, only looked at me with her sad eyes and sad face and solemn outfit.

Heart made by his daughter

The act of getting dressed and styled had nothing to do with a date. Our family was headed to the memorial for our neighbor—a husband and father with two young children. I didn’t really know him, but we saw him every day as he walked his daughter down the hill to school with his young son and family dog in tow. Holding hands, looking at leaves in the gutter, and admiring stones and bugs, they were a part of our morning routine as we looped back from dropping our big kids at middle school. That simple act of walking with his children will be the image I hold of him; it’s a lovely image. He had a gentle, loving presence and a gentle, patient voice.

“I wish I’d taken some Vitamin A,” I’d said to my husband as my heels clinked along the sidewalk, referring to the anti-anxiety medicine I’d been prescribed before Riley went into the hospital. “Do you have it with you?” he’d asked in reply as he extended his arm for me to clutch. I didn’t, and my body was rigid with the emotions of my son’s death and of walking into his memorial only a few months ago. Another untimely death. More grieving children and families.

Where Riley, father, and family cat live now

This Death seems to have paid no attention to years. This Death has given little consideration for the young people left behind who grow up without their brother or their father. This Death couldn’t care less for the bereaved mother (vilomah) or the bereaved wife (widow). This Death is a thief. This Death has stolen time. This Death has snatched the yet-to-be celebrated milestones because someone will be forever missing. This Death has dropped us into a forest thick with lost and sorrow. Death—you greedy, unfeeling charlatan.

These two unrelated deaths—an 11-year-old boy and a father just three doors down—seem related. I like imagining this father’s energy mingling with my son’s energy, looking after him. This sweet man who walked his children to school every single day.

As I sat in a row of chairs, my eyes were locked on the images of this man’s life. There were pictures of him as a toddler, the preschooler (like his son), the elementary schooler (like his daughter), his teenaged years, college years, the young couple in love, their engagement party, wedding, with his newborn’s sleeping body pressed to his skin. Friends and acquaintances sat by my side, held my hand, asked about how I’m doing and how I’m feeling about Riley’s approaching birthday. Their questions tried to bridge the gap between the two realities we now live in. “Today isn’t about me,” I replied. But with barely a pause, I talked about Riley anyway, cried, and cried some more for this now misshapen family.

It’s true that the day wasn’t about me. It was about us—all of us: her, her husband, her children, the rest of her family, me, Riley, my other children, the rest of Riley’s family, and the community of other people who also grieve these losses. And even though the day wasn’t about me specifically, it would have been impossible to turn the volume down on my own grief. So perhaps when I told my reflection that morning: “You can do this,” I meant that I’d get through the memorial by being as authentic to the experience as I could. I didn’t pretend to be anything other than what I was—a grieving mother who is also grieving for her neighbors.

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.