SUDC Foundation Peer Dad Support Group Facilitator and SUDC father to Maria, Will Carrington, sits down with Erin James, SUDC mother to Maddie, for a deeply personal conversation about love, grief, family, and moving forward after unimaginable loss.

Together, they explore the complexities of parenting after SUDC, supporting surviving siblings, finding meaning after tragedy, and learning how joy and sorrow can coexist. Erin’s reflections on Maddie’s life and legacy offer a powerful reminder that love continues to shape a family long after loss.

Will: Please tell us about your daughter Maddie and the rest of your family.

Erin: Maddie was born on June 18th, 2014. From the day she was born, she was pure joy. There’s no other way to describe her. She had a beaming smile and gorgeous hazel eyes. She loved her big brother Logan and sister Ally, often playing peek-a-boo and stealing bites of their frozen yogurt any chance she got. She loved watching Sesame Street with our family dog, Selma. She lit up every day when her daddy came through the door after a long day at work.

She was attached to me all hours of the day, and I wouldn’t have changed a thing. Maddie was a happy, healthy toddler. She took her first step at 11 months old and met all her well visit milestones. On August 12th, 2015, she didn’t wake from her sleep.

Will: Many SUDC parents struggle with the idea that their child would have survived if only they had done something differently, even when they know it’s not true. Do you have a version of that story?

Erin: I most certainly do. Maddie had a mild cold two days before she died. I gave her an age-appropriate, over-the-counter medicine to help ease her symptoms. The next day, she was completely back to normal, playing and having fun. After she died, once my mind started to catch up, I immediately thought that must’ve been it. Surely that was it- what else could it have been? My husband Lee is a physician, so when I shared my irrational but understandable fear with him, he immediately assured me it simply wasn’t true. All these years later, after an exhaustive process of racking his brain for everything he learned in medical school, speaking with Maddie’s pediatrician & the medical examiner, and speaking with the researchers who’ve gone through our family’s and Maddie’s medical history and studied her death, he is even more confident there is absolutely nothing we could have or should have done differently. It doesn’t erase the pain and trauma of losing our child this way, but it definitely helps me sleep a little better. It’s something I wish for my fellow SUDC parents- not that we should ever stop looking for answers, but that they could be reassured they did nothing wrong.

Will: What went into your decision to add Jake to your family after Maddie’s passing?

Erin: Lee & I always joked that we could’ve added 10 more children to our family after Maddie, because she was the most lovely, delightful child. We didn’t know definitively if we would have another, but that was the sentiment after she was born. It was a different sentiment altogether after she died. The world seemed to appear in black and white. Lee and I, especially, were moving in slow motion. We never hid our sadness from our living children, but we both feigned happiness as much as we could for them. Looking back now, I realize it was a survival mechanism. Slowly we started to find small joys again, but when Jake came along, that’s when the color returned to our world.

That’s not to say having a newborn and then a toddler was easy, after everything we had been through. But we all found joy, Logan and Ally included, in introducing this new little family member to the world, much like how we felt when Maddie was born. Jake helped us move forward in a way I’m not sure would have been possible otherwise.

Will: Please tell me about moving from North Carolina to Florida after Maddie passed away.

Erin: We had a difficult decision to make after Maddie died. Lee had just started his fellowship at UNC Hospitals in Chapel Hill. We made so many friends that are now family there. When she died suddenly and unexpectedly, our community showed up and took care of all of us without missing a beat. We loved the life we had built, but at the time, I couldn’t imagine staying without her there. She was our little Tar Heel; it would never be the same. We also knew surviving this would be a long, arduous road, so ultimately, we decided to move back to Florida where both our families live. Her room was left untouched for the 8-ish months we stayed. I would sometimes go in just to sit in her rocking chair, remember holding her and weep. When it was time to pack up, our family and friends did it all, no questions asked. We were so lucky to have them. We kept her crib, her toys, her clothes. Most of those things are still packed away. Some of them we passed on to Jake, to help him have a connection to her too. I sometimes go through it all just to feel close to her, although the sweet smells have all disappeared. My best friend’s mom made a quilt out of Maddie’s clothes for us. It was difficult to wrap my head around cutting up all her clothes, but it’s been the best gift I’ve ever received. I wrap up in it often and look at each piece of clothing, remembering what she looked like wearing it.

Will: It’s now been eleven years since Maddie’s passing; your older children are adults/teenagers and even Jake is now eight. How has life improved since the aftermath of Maddie’s death? And do you miss anything from that time?

Erin: Lee & I have always been people who try to never take a moment for granted. It’s something we’re proud of passing down to our children. Sadly, but understandably, in the early months and years after losing Maddie, all we could remember was the trauma associated with our time in Chapel Hill. We’re now able to look back on our time there as one of the happiest of our lives. We’ve found our new normal, which includes holding joy and sadness all at the same time. We could be having the best day of our lives, and someone inevitably ends up crying, because Maddie should be here. But we’ve learned that our sadness is simply love. It’s our way of keeping her with us on all our adventures. At some point as a family, we decided our purpose in life was to do the things Maddie didn’t get the opportunity to, to love one another and enjoy every ounce of life for her. It’s become our unofficial family motto, and Jake is our ambassador.

Will: Your two older kids – Logan (now 22) and Ally (16) recently produced a really beautiful song and video entitled Whirlwind (Albany Point – Whirlwind (Official Video). Please tell us about the connections between this song and the loss of their sister.

Erin: Logan and Ally have always been peas in a pod. After Maddie died, they became even closer, and that has been such a blessing. Their childhoods were ripped away, but they had each other to lean on. They began making home movies, recreating Indiana Jones and other favorites to pass time. Now that they’re older, their closeness remains. They wrote and produced a song together and, with the help of a film school friend, created a beautiful video for it. When I saw it for the first time, I saw so many parallels to our lives when Maddie died and to how far they’ve come since then. Firstly, the video takes place in an abandoned school-completely trashed, spray paint on the walls, vines growing over the windows. That’s what our world felt like when she died- time stopped on a dime for us, but the rest of the world kept turning outside. They also play childhood games in the video, like hula hoops, throwing a football, playing tag and even a card game including Maddie’s favorite monkey and Jake’s favorite bunny. (Yes, I bawled. The kids anticipated it and even made a bet that I would make my phone screensaver out of it. I did. They know me well.) Watching it felt like a beautiful culmination of all the years of heartache we’ve been through together and of them holding onto life at the same time.

Helping our children navigate the difficult life lesson that grief and joy can coexist after such unimaginable heartbreak, then seeing it come to life on screen is now our family’s crown jewel.