Insight from the 2019 Annual Meeting of the National Association of Medical Examiners
In this edition of SUDC Insights, we share a piece written by SUDC mother, Melissa Monroe, in memory of her daughter Alice. It was originally published on her blog, Mothering in Memoriam (http://motheringinmemoriam.com/).
I didn’t want to go, but based on Grace’s recent struggles regarding the death of Alice, I thought it might be good for her to meet other children who had siblings who died.
As many of you know, any difficult decisions—and there were many— I had to make after Alice died, I made by first asking, “What would be better for Grace?”
This instance was no different, so off we went to the SUDC (Sudden Unexplained Death in Childhood) Family Retreat in Phoenix, Arizona. We made plans to see some loved ones who live in Arizona: my cousin Patti and her daughter who is 15 days older than Alice, as well as my friend Teresa and her family. I figured even if the retreat workshops and socializing with bereaved parents proved difficult for me, at least I would be able to see loved ones.
If anyone needs a retreat, it’s the parent of an SUDC kid, but 0/10 parents want to be in a position to go to an SUDC Retreat. The word “Retreat” seems too insignificant to counter the SUDC part of the title. At least it did to me. If I could retreat from the death of my child that would be stellar, but unfortunately, death seems to be permanent. I guess the word “Retreat” just seemed like a bad joke next to the SUDC acronym.
I couldn’t handle kids dying before I had kids, it became 1000% worse after I had kids, and then I had to endure the unimaginable: going through it myself. I wasn’t sure if I could bear all of the other heartbreaking stories, frankly, for I was 100% certain every story would break my heart. I didn’t want this to happen to my own kid. I didn’t want it to happen to their kid. I didn’t want it to happen to any kid. This is not a thing I wanted to have in common with anyone. I wanted to retreat all right, but I had the other meaning in mind. I was feeling more like the first definition of retreat, “the process of withdrawing especially from what is difficult, dangerous, or disagreeable,” and less like the second definition, “a place of privacy or safety.” As it turns out, there is no withdrawing from the difficult path of a bereaved parent; therefore, only the second definition is available.
This is a long way of saying that I was leery about attending. I was concerned that an SUDC “Retreat” (second definition) was not really possible and that I would regress into grief and PTSD.
I went for Grace.
Perhaps I am a weirdo (hush now), but I do not find comfort in numbers when it comes to SUDC. Every time I see a new parent in the group, my heart breaks into a million little pieces again. At this point, my heart is about the consistency of kinetic sand.
I suffered from PTSD (another shitty acronym) after Alice died, as some of you know. I worked very hard to become free of those letters. Many triggers are not immediately obvious, but one thing I know that can still trigger me is the “What ifs?” I no longer send myself down the road of the “What ifs.” If I notice I’m doing that, I simply redirect my thoughts and move along. This generally works quickly and effectively. The SUDC information—what little there is—is still something that can send me into the “What ifs” and so, to preserve my sanity, I only engage in small amounts at a time. When I do engage, it is out of a sense of civic duty. If I didn’t feel my involvement could help someone else, I would avoid it completely. It took me a long time to get involved with the SUDC Foundation because I didn’t know what I had to offer them except for additional data, which I did provide, but which was very triggering to provide. You have to go through every detail of what happened and every detail of your entire family’s medical history. Every question led my head to spin: “OMG, was THAT important? Could that seemingly insignificant event have contributed? Why didn’t I know? OMG, THAT matters?!” And so on. It was a giant spiral into the “What ifs” and it really messed me up. Once I provided that data, I was free to join the Facebook group and support groups, but I didn’t do that for a long time. I honestly did not know what I had to offer anyone. I felt like I needed to be more “together” before I offered support to anyone else.
I know what you are thinking. You are thinking, “the groups are there to provide support as well.” I understand that. But as I mentioned, I wasn’t sure I could handle all the other heartbreaking stories. Sometimes you have to put on your oxygen mask before you can do anything else.
I waited until my mask was as secure as it was going to get, and could see Grace needed a different mask than I did. Grace, I intuited, needed some support from kids in her situation inside her oxygen mask.
One must find meaning, and helping others in Alice’s name still seems to be the only thing that means anything. The help doesn’t always have to be as big as throwing a benefit concert. A knowing smile might help. Going through Alice’s medical information so they can compile data may help find a cause for these unexplained deaths one day, so I did it, though triggering. Talking to someone about their other children might help. Talking about the one that died seems to always help. I had to learn that sometimes the little actions make as big a difference as any large ones. I also waited to help in those small ways until I could do so without losing my own oxygen mask.
I eventually learned that I could help without having my mental health suffer. I learned to honor those boundaries in my own psyche.
I was a medical researcher in a former life. I loved research since I was a youth. If, in my youth, someone told me this would happen to me, I would have bet every dime in my possession that I would have thrown myself into research. But I would be a broke-ass beoch now because I didn’t do that. I couldn’t. It was not a struggle to come to this conclusion. It was 100% clear that I couldn’t. There were no answers scientifically, so I guess I moved right along to my other favorite topics: philosophy and spirituality. Reading SUDC research threw me in to panic attacks and PTSD symptoms.
Nope. Nope. Nope.
This is all a long-winded way of saying: I was concerned that the topics covered at the retreat might send me spiraling into “What ifs.” I was worried that what should be a retreat would cause my mental health to suffer.
I decided Grace and I would simply stay at the pool if it became too much. Water always helps me.
I told no one that I was concerned about. Not a soul. Well, I guess I told my therapist, but he didn’t share my secret. The concern lived in the back of my mind while I juggled parenting, running a business, and the other tasks of living. I started to have insomnia again, which is a sign for me that I am in danger of triggering the PTSD symptoms. I doubled my efforts at self-care and adequate sleep.
A couple of days before the retreat, Teresa wrote me and asked whether I wanted her to attend any of the workshops with me. I was stunned. How did she know I was struggling? I hadn’t told her. It never occurred to me to ask someone to go with me because, I suppose, I became accustomed to going alone down the path of a bereaved parent. I say this not for pity; I don’t think about it generally and I’m not particularly bothered by it. It is simply a fact. I also thought, “Who the hell would want to go to a workshop for bereaved parents unless you were unfortunate enough to be one?”
In any event, I sighed a breath of relief. My thoughtful, intuitive friend Teresa gave me the gift I didn’t even know I needed.
I still wasn’t sleeping great, but I did feel relief after Teresa made that offer. Thank you so much, T.
We saw Patti and Sammi before the events started and had a great afternoon swimming in the TOTALLY RAD (if not overly chlorinated) pool at the hotel. It was surreal to watch Sammi play with Grace realizing that Alice would be that age now. Grace likes to talk about what Alice might look like now, but even with a fairly vivid imagination, I cannot seem to envision her any older than she was. As I watched Grace and Sammi play, I did, however, find myself imagining how Alice might play. How she might interact with Grace. How well she might swim. How much she may like swimming. What other activities she might like. What her laugh may sound like now. What the weight of her head might feel like on my shoulder.
I rarely, if ever, have become so entranced by what Alice might have been at this moment in time.
I was able to still carry on a semi-normal conversation, but I was quite distracted by the aforementioned. I was grateful, however shaken, for the opportunity to have a glimpse of what life might be like if Alice were still here. Those opportunities are so very rare. So, thank you Patti, for making the trip. It was a real gift. Love you.
At the welcome reception later that evening, we were given name badges that had our name on one side and our deceased child’s photo and name on the other. Genius. Some of us “met” via the SUDC family support Facebook page, but had never met in real life, so this was a great way for attendees to realize, “Oh! You’re Alice’s mom!” or “Hello, mom-of-Ace!” They also brought the giant SUDC banner that has the photos of hundreds of SUDC children. It’s difficult to look at it without thinking, “All those sweet faces gone without reason. All those parents shocked, traumatized, grieving and full of unanswered questions just like me.” It’s unthinkable.
It was also an enormous relief to simply be acknowledged as the Mom-of-Alice again. I never stopped being Alice’s mom, but I have definitely stopped being acknowledged as Alice’s mom for the most part. This is a difficult part of everyday life, but I don’t bitch about it much because complaining doesn’t accomplish anything.
Grace met another 10-year-old girl at the welcome reception that night. They became fast friends, spending the entire night talking and laughing and making crafts in their siblings’ memory. Everyone there was so nice and welcoming. We were treated to a performance by local Native Americans, which was very special. I also noticed that Grace was uncharacteristically outgoing with some of the adults in the room. I could tell this experience was good for her, but I realized I was still anxious about the workshops the next day.
There were freshly bereaved parents there as well. By “freshly” I mean, weeks or even months into their particular Aftermath. I could tell which ones were “new” by the look on their faces. They were still very clearly in shock. I knew the look, but more importantly, I knew the feeling behind the look. I wouldn’t wish that feeling on my worst enemy and it is not particularly fun to revisit. I also knew that I was in a unique position not to treat them like the rest of the world, so I tried my best to be with them in that feeling without going back to that feeling myself. It ain’t easy. It’s not a perfect art or science. But it is worth it to try, I learned.
I tried. Lord knows I tried.
On the way back to our room, Grace said to me, “It’s SO NICE to be able to talk about Alice and have people ask about Alice because no one asks about Alice anymore.”
And there you have it. That’s all I needed to keep going. Knowing that Grace felt that way made this trip worth the time, money, and anxiety. I have the tools to navigate the anxiety, I have learned how to retreat from social contact when it becomes overwhelming, and I know how to empathize. I vowed to keep plugging along and do my best. Because…
This was good for Grace. This was good for Grace. This was good for Grace.
I woke up two hours after I fell asleep. I knew I was triggered. I took a Tylenol PM and hoped it would work.
Friday night slowly became Saturday.
After breakfast on Saturday, Teresa arrived and we took Grace to her kids’ yoga class so she could start her day of yoga, drum circle, crafts, etc. while we attended the keynote address.
The welcome talk and keynote speakers were both wonderful, though a bit triggering for me. I cried at times. Other people cried at times. Boxes of Kleenex appeared as silently as the tears on the parents’ faces. I noticed that I had “the hollow feeling” and a racing heart; I knew that meant I was at risk. I could see other participants crying and leaning on their spouse or their parent. I did not have a spouse or parent to hold me, but I did have my dear friend that offered to be there for me without having any clue that I was worried about it, and that was more than enough to get me through the morning.
The keynote grief speaker used a lot of props, which I could see was helpful to some. Teresa passed me a note: “She is the Carrot Top of grief…in a good way!” I laughed and wrote back, “Now if only she would go Gallagher and smash the shit out of a watermelon.” I was so incredibly grateful that Teresa was there with me, passing me notes that were simultaneously hilarious, wise, and thoughtful, and even held my hands for a spell. Thank you, T, from the bottom of my heart. You made such a big difference. You have no idea.
I followed that course with a drum circle which ended up being far more healing than I could have ever imagined. I kept catching the eye of one mom in particular. She gave me a smile that belied the pain behind it, and I was sure the smile I gave her matched it. No words necessary. We got it.
Don’t worry, I’m not going to grow dreads and hang out at Griffith Park on the weekends. I’m just saying that there is something to the drumming thing, and I would have never tried it had it not been offered at that retreat. Perhaps it was being able to gently hit something. Perhaps it was the rhythm. Perhaps it was the communal beat. There is some science to support the healing aspects of communal activity and rhythm (choirs, bands, sports team, dance classes etc.… see https://www.heartmath.org/ for more info). I have no idea, but I was back to normal by the end of the circle. I think I’m going to buy a drum, in fact.
No dreads. Just the drum. Relax.
Grace was happy to see me after our workshops and we scampered off to a lovely lunch with the other SUDC families. The rest of the day was spent in the pool, going down water slides, meeting other SUDC families and playing with their kids. The SUDC sponsors even rented cabanas for us WITH CABANA BOYS. These grieving parents really know how to treat a girl.
I sat and read my Edward Snowden book, drank a vodka tonic, and tanned my legs. It was all spies, thighs, and vodka on ice for this grieving mom. Phoenix is hot, however; eventually, the water called…
At one point, an SUDC sibling ran past me on the stairs on the way to the slide (oh yes I did) and yelled, “RACE!” And so we did. Many times. Grace caught up and joined the fun. Again she said, “It’s just so nice to be able to talk about Alice in a normal way!”
Yes, my sweet girl. It is a priceless gift. It brought tears to my eyes to see her so happy and relieved, and I was relieved that my instinct to bring her had been on target.
That evening, there was an Apache Fire Ceremony for all the kids that died. As if on cue, the moon was full and large and orange. They had us write notes to our departed loves. After a sage ceremony and brief talk (that while not particularly helpful, was well-intended) by the elders, they called the name of each child. The family of that child walked up and tossed their notes into the fire. The elders quietly played the flute and drum throughout; it was silent otherwise. We watched the notes burn and become smoke that can go everywhere, like the spirits of our children. It moved me in a way I could not have predicted.
The trip was capped off with more pool time, a little homework, a quiet Sunday morning, a lovely brunch, and some quality pool time with Teresa and her family before we left for the airport. It was so wonderful to be able to catch up with my friend.
Grace cried and cried because she didn’t want to leave. She didn’t want to leave the Wigwam (I mean, who does?), she didn’t want to leave the SUDC people, she did not want to leave her cousins and friends.
Turns out that “Retreat” was significant enough a word to match the SUDC part of the title after all. It will never conquer the SUDC part, it will never conquer the grief and the PTSD, but a little respite and connection on a difficult, isolating path never hurts. It occurred to me that Phoenix was the perfect city name for this type of retreat. Every attendee had to rise from the ashes of unthinkable loss in order to be there.
Grace’s needs led me to this second-definition-of-retreat; I would have never taken it otherwise. As ever, she is my Saving Grace and my eternal Retreat.
Melissa Monroe, Guest Blogger