#EMOTIONALHEALTH

Destigmatizing SUDEP

Senior Director of the SUDEP Institute
Wife and mother to 2 boys and a forever 7-year-old girl, Sally lives in Wisconsin where she has made it her life’s work to raise awareness, drive and support research, and ultimately put an end to the tragedy that is Sudden Unexpected Death in Epilepsy, otherwise known as SUDEP.

One mother’s mission to honor her daughter by increasing awareness and education around SUDEP and supporting research to eradicate it

 

Mother’s Day 2014 is a day I will never forget. That weekend was beautiful and sunny, and my 7-year-old daughter, Lydia, spent most of it playing outside with her brothers, smiling and happy. The Friday before, I was scheduled to drive 3 hours north to spend Mother’s Day with my own mom. And, prior to leaving, I was struck with an uncharacteristic—yet unrelenting—urge to say goodbye to all my children in person. To drive to their respective schools and tell them that I loved them, face-to-face. It was so uncharacteristic, in fact, that Lydia’s caregiver and school aides were downright shocked to see me. (Normally, I’d go straight to work, not a moment to lose.) And after lavishing Lydia with kisses, the aide joked that I’d given her the “full service treatment.” I had no idea that I’d drive away that day and it would be the last time I’d ever see my daughter alive. But at least she knew she was loved.

You see, I woke up on Mother’s Day that year to the news that Lydia had passed away in her sleep. She was born with a rare chromosomal disorder known as Kleefstra syndrome [1], which can come with additional diagnoses—in her case, epilepsy. And while we were fortunate that Lydia’s epilepsy was fairly well controlled for most of her life, when she turned 5, she began suffering from tonic-clonic seizures. She was later diagnosed with a rare epilepsy that occurred in her sleep and couldn’t be seen with the naked eye. It was one of these nocturnal seizures that ultimately took her life.

 

Image of Little Girl

 

WHAT IS SUDEP?

SUDEP, or Sudden Unexpected Death in Epilepsy, is a rare—and rarely discussed— condition that happens to be the leading cause of death in people with chronic, uncontrolled epilepsy.[2] Yet, despite this fact, most people that I meet in my role as Director of the SUDEP Institute have never heard of it. It was SUDEP that took my daughter 5 years ago, and it is SUDEP that I have since devoted my life to eradicating.

After Lydia’s passing, I understood quickly that, although she was physically gone from this earth, her journey was far from over. It became clear to me that she’d live on through the work I’d undertake on her behalf. Which is why, when the role of Director of the SUDEP Institute became available, I pursued the position relentlessly. Because I knew it would be the next step in our journey to put an end to SUDEP once and for all.

 

“It was SUDEP that took my daughter 5 years ago, and it is SUDEP that I have since devoted my life to eradicating.”

 

I see my mission as Sr. Director of the SUDEP Institute being threefold: (1) to increase awareness and education, (2) to help drive and support research, and (3) to support the bereaved. I want to empower individuals living with or caring for someone with epilepsy to ask the right questions about what they can do to reduce their risks. We don’t know what causes SIDS but, before we leave the hospital with a newborn, we’re still instructed not to put them to sleep on their stomach. I want these same frank, matter-of-fact conversations to happen about SUDEP. I want to empower families to demand answers to their questions about SUDEP. Don’t know the right questions to ask? Come to the SUDEP Institute. We’ll help you figure it out.

 

THOUGHTS ON THE GRIEVING PROCESS

In my role at the SUDEP Institute, I unfortunately meet many bereaved parents. I am by no means a trained grief counselor, but I have learned about dealing with grief as a parent and as part of a couple. And the first thing I tell people who come to the institute seeking advice is that nothing they’re feeling is wrong. If you’re in an anger stage, then you’re angry. But I see the breakdown happen when couples aren’t communicating. It takes communication to figure out how to manage each emotion, move through it, and get to the other side. Personally, for my husband and me, it took consciously recommitting to each other and to our children before we could move through our particular danger zone. Had we not communicated and not been honest in a gentle, loving way, we would be in a very different place today—and we are among the lucky ones. Plenty of grieving couples find their emotions impossible to move through. In which case, I encourage them to seek the guidance of a professional.

 

“We don’t know what causes SIDS but…we’re still instructed not to put newborns to sleep on their stomach. I want these same frank, matter-of-fact conversations to happen about SUDEP.”

 

I don’t want to sound clichéd, but there really are stages to the grief journey. And the order in which these stages occur can be different for every single person. Let me give you an example: When Lydia died, I immediately went into ‘mom mode’—I canceled her health insurance and her diaper delivery, I returned or donated all her medical equipment. I was all do, do, do. But then, at around the 3-month mark, it all quieted down. And that’s when the loss itself really hit me. I began to feel the real, raw, emotional effects of her being gone. Meanwhile, my husband, who had been actively grieving for those first 3 months and was starting to come out of it, was confused about why I was suddenly falling apart. It took a lot of communication. A lot of talking about how we were feeling and why. And when we’d fall into those inevitable periods of anger, we’d talk about that, too. How do we work through this anger? How do we manage it effectively? How do we make sure we’re still positive influences for our children even though we’ve lost one of them?

And for those who come to me seeking advice on how to support a bereaved loved one, I remind them that grief is most awkward for the people not experiencing it. So many people have the instinct to not mention the person who’s passed—they don’t want to stir up emotions. They don’t want to see someone cry. But, in fact, the support that’s been most helpful for me has come in the form of Lydia reminders. I have one friend who’s texted me on the 11th of the month—every month—for the past 5 years. Just a simple “I’m thinking of you.” And it makes all the difference in the world. At Christmas, I still hang a stocking for Lydia, and I ask my friends and family to fill it—not with gifts, but with momentos, with cards, with anything small and simple that reminds them of my daughter. This way, every year my family can look forward to unwrapping a collection of proof as to how much Lydia was loved.

So I guess that would be my biggest piece of advice to anyone looking to support someone who’s grieving: don’t forget the person they’ve lost. Send a card. Not on the loved one’s birthday, but on a random Monday. Support them by remembering to acknowledge the person who is no longer there. In the first weeks, ask if you can do their laundry. Ask if you can grocery shop. Ask if they’d prefer you just go away. But then also make sure to be there 6, 9, 18 months down the road. That’s when they’ll need you the most. When everyone else has moved on and all they’re left with is their loss. Ask if you can take them to dinner just to talk. And that’s when you ask them how they’re doing. The smallest things really are the most meaningful.

Marriage, parenthood, living without Lydia—it’s a work in progress every single day. Every day, life goes on, even though we still carry this loss, this hole in our hearts. It’s hard on a marriage. Which is why we work every day to be loving with each other—because that hole, that feeling of loss, doesn’t ever go away. And anger always finds a way of resurfacing. Maybe I’m on the highway and get unreasonably enraged when someone cuts me off. You never know how anger might manifest. So you have to be diligent.

For my part, I try to stay true to my do, do, do approach to life. Both at home and in my work at the SUDEP Institute, to which I am fiercely committed. While more people know about SUDEP today than ever before, sadly, most of the bereaved family members I meet at the institute still tell me that they’d never heard of SUDEP until it took their loved one. So many people still don’t know that SUDEP exists, let alone how to reduce their risks. Which says to me that there is still a tremendous amount of work that needs to be done. The research needs to continue. We need to know what causes SUDEP in order to figure out how to stop it. We need more neurologists, pediatricians, internists—anyone who knows about and treats epilepsy—to talk about SUDEP with their patients and teach them what they can do to minimize their risks. For a parent to say to me “we didn’t know about SUDEP, so we didn’t know to take the precautions” is a heartbreaking dynamic that needs to change, and I’m committed to seeing that it does.

 

“Sadly, most of the bereaved parents I meet at the institute still tell me that they’d never heard of SUDEP until it took their child.”

 

MY LYDIA LESSONS

People always ask me what I’ve learned from my journey as Lydia’s mother, and I can’t say there’s one specific takeaway, but rather a collection of lessons that inform my choices every single day. Before Lydia came into my life, I had very little exposure to people with disabilities. But through my role as her mother and caregiver, I found strength and inspiration both in the milestones she was able to accomplish as well as those that she couldn’t.

Take, for example, the simple childhood joy of riding a bike. My son had been riding his 2-wheeler for well over a year when, one day, I recall being amazed for the first time by his legs and their ability to push the pedals. Lydia struggled with so many things that most people take for granted—it took her 18 months to learn how to sit up on her own. But because of this, I’m able to appreciate and enjoy so many more of the small moments in life that ordinarily pass you by. Because of Lydia, on that particular day, I was able to take note and be astonished by something as simple as my son peddling his bicycle. So many lessons I learned from this one child. So many I continue to learn, even in her absence. Which, make no mistake, I still feel acutely every single day.

Lydia never uttered a word during her 7 years on this earth, but she taught me more than any other human I’ve ever known. Through her, I learned more than I thought possible about perspective and the impact a single person can have on others. I learned so much from her, both while she was alive and each day since she’s been gone. And I’m still learning. Lydia taught me how to be strong, how to have a voice, and how to be an advocate—for her, for myself, and for other families just like ours. I feel so fortunate to have been able to find myself through my daughter, and I wake up every morning excited to discover what her legacy has in store for me next.

 

Image of Little Girl

 

WANT TO KNOW MORE ABOUT SUDEP?

• Visit the SUDEP Institute or TakeOnEpilepsy.com for more information about SUDEP, including ways to minimize your risk

 

NEED HELP TALKING ABOUT SUDEP?

• Visit the Epilepsy Foundation for tips on how to start this difficult conversation with your healthcare provider

 

References: 1. Kleefstra T, de Leeuw N. Kleefstra Syndrome. 2010 Oct 5 [Updated 2019 Mar 21]. In: Adam MP, Ardinger HH, Pagon RA, et al, editors. GeneReviews® [Internet]. Seattle, WA: University of Washington, Seattle;1993-2019. 2. Tomson T, Nashef L, Ryvlin P. Sudden unexpected death in epilepsy: current knowledge and future directions. Lancet Neurol. 2008;7(11):1021-1031.

 

 

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