2021 Walk to Remember — Opening Speech

Welcome. I’m so sorry you’re here. I’m not because I’m glad you found your way here but I am sorry that you needed to find your way here.

My name is Maile Madigan. I’m Lia’s mom. I’m here because on September 13th, 2018, our daughter Lia died suddenly of SIDS when she was 5 months old.

As I thought about what to say today I felt torn between some very conflicting narratives that I could share. Do I talk about Lia’s death? About my grief, my suffering, my pain so you know you’re not alone? I could give you examples of how much it hurts deep down my core. A level of pain that is more than I ever thought possible.

Or I could tell you about Lia’s life, her laugh, her chubby cheeks, her amazing relationship with her brother Carter, the moment we found out she was a girl and we felt overcome with joy that we’d get to raise one son and one daughter. I could recount her magical birth on April 17th, or the moment she met each family member, the way her cousins obsessed over her, or the times they played boisterously around her while she fell sound asleep on the blue sea mat on our floor in the midst of the chaos and love. I could tell you how much I loved nursing her and rocking her to sleep in my arms. How perfect each finger and toe was. I could share with you about the adventures that we took together in her 5 months here on earth or the way it felt to kiss her soft cheeks and know that the love of a parent is unlike anything else. A level of love that I never knew possible.

Or I could share with you who I am now, standing before you as an entirely different person from who I was the day before my daughter died. I will never be the same person again and part of my grief journey has involved letting go of who I used to be. The struggle of viewing the world in an entirely different way than I once did. The vail has been lifted and we no longer get to think everything turns out ok because for us it didn’t. A level of change that I never imagined possible.

Or maybe I talk about how much has shifted in the last 3 years since I first came to this walk. The shift from being unable to image the sun having the audacity to rise again to welcoming a sunny day as an opportunity to get outside and be in nature with my two beautiful living children. I actually remember the first time I noticed color again after Lia died - obviously I knew things had color but I literally didn’t see it until one day I did - I noticed the bright greenness of the leaves. Not because I stopped missing Lia, but because I was starting to learn how to hold my pain and simultaneously be present in the world around me. A level of hope that I never dreamed possible.

So as I debated with myself about which version to share, I realized I don’t have to choose between my pain and my love. Sometimes I despise it and other times I welcome it, but no matter how I feel about it, my pain AND my love are mine, because my relationship with my daughter is uniquely mine. That can feel lonely at times, but at other times it feels special and oddly comforting to me. The way that I carry my grief and the way I connect with my daughter may shift as the years pass but I know now that I get to carry it with me forever and even death can’t take that away.

For me, surviving grief has been about learning to live joyfully and heartbroken all in the exact same moment. But that’s not how it was at the beginning.

I sat right there where you are, 5 weeks after Lia died. I remember during my first walk that the words of the mom giving the opening remarks impacted me but I couldn’t remember any of what she said. In fact, I don’t know that I really remember any words that anyone said to me for months after the ER doctor looked at me and said we did everything we could.

Already in those first 5 weeks, I had sat my 3 year old son down to tell him his sister died and she was never coming back. I had arranged a funeral, donated my daughters heart valves, paid ridiculous hospital bills, called friends to share the unfathomable news, gone to a terrible therapist who gave uncomfortable platitudes and talked about moving on (definitely not what I was looking to do). I drank a million grapefruit-flavored seltzers, ate my weight dried mangoes, and consumed meals that friends and family put in front of me because at some point my husband Dan and I decided we were going to live, even if there were many moments we felt like we didn’t want to. I had flipped a table at Dunkin Donuts out of pure rage. I had screamed at family members for harmless blunders and been forgiven for lashing out. I had spiraled into a web of question asking, silently screaming “why” inside my head, only to realize it was all outside of my control. I had been unable to focus or concentrate with my brain permanently changed by the grief fog. Dan and I had walked the streets of Watertown at 3am aimlessly and desperately trying to make sense of something that will never make sense. I spent hours numbly sitting on the couch having no idea how we went from feeling so busy to having no way to fill the empty time that extended before us. I had cleared out Lia’s bedroom to turn it into a painting studio, made a video collage of Lia pictures set to music, printed portrait photographs to put up around the house, and spent hours with time just passing by that I currently couldn’t tell you what I did. We were wrapped in love by our community of friends and family who stepped up in absolutely amazing ways. Yet nothing anyone said or did could bring our baby girl back. She wasn’t just gone on that one day in September, she was gone from all the moments in the future too. Those first 5 weeks and many weeks after that were gut wrenching torture that, as I stand before you now, I cannot believe we survived.

It has now been 3 years and 5 weeks. Which any grieving parent will tell you is still very early in my journey. But after those 3 years and 5 weeks, I stand before you a different picture than what you would have seen here 3 years ago. I’m definitely not going to tell you that I found some reason or purpose for my loss because you don’t have to grow into a better person from grief - you were a perfectly good person before all this. I know I would trade any kind of personal growth to have my child back. Sometimes there is no meaning, no greater purpose.

But I will share that I’m no longer desperately combing grief books for answers about how to survive. I don’t actually have an answer for you, I just know I am surviving. I didn’t survive because I’m particularly strong (although people love to say that), I survived because in the end it was all I could do. I did it one minute at a time until the minutes didn’t feel so excruciating.

I’ve found things that make it just a little easier to carry. I’ve found community in connecting with other parents who experienced loss (some of whom are here right now). I’ve gone to grief groups, tons of therapy (finally found a good one), I’ve reconnected with dance, I’ve tried acupuncture and massage because grief takes a real toll on the body physically, I’ve spent more hours than I can count walking in the woods with tears streaming down my face. I’ve written about my trauma, my memories, my connection. I’ve made photo albums, written a rhyming children’s book about the Adventures of Carter and Lia. I shared articles with my family to guide them and help them understand that I don’t need them to fix this (they can’t) but I need them to acknowledge my pain and remember my daughter with me. I needed to tell my story over and over and over again until my brain could believe that it was real. I was fortunate to have people in my life who could sit and listen to the horrific details without flinching and awkwardly shying away. My friends and family surrounded me like a herd of elephants does after a mother loses her baby elephant, using their physical presence as support and never pushing the mom to move away from her baby until she’s ready.

Now when I see an outfit that was Lia’s or a toy that she once played with I think of Lia and I feel the tight pain in my chest but I feel something else too - I feel connected to her. I’ve found ways to light candles and visit her tree that feel meaningful. I am living my life. A different one than I ever imagined but I am living it with love. I’m able to be truly joyful with my son Carter and my daughter Cora who was born 2 years after her sister died. And in the most joyful of moments, that’s when I feel Lia’s presence the strongest - I feel her with us. I imagine what it would be like if she were still with us.

What people often don’t understand is that we didn’t just lose our children in the past, we lost the entire future we should have had with them. So often I wonder what Lia would have been like now as a 3 year old - running around playing with her brother, doting on her little sister. Making our family whole in a way it never will be. It’s the job of a parent to protect our children, now we protect their memories.

I learned, that as a mother, we keep part of our child in our hearts forever - I don’t mean that metaphorically, I mean it literally - some of an unborn baby’s DNA circulates into the mother’s bloodstream while she’s pregnant. Most of the DNA leaves after the baby is born but some cells remain forever in the chambers of our hearts. So each of my 3 children is with me always.

I love that I got to talk about Lia and share her with all of you today. I want to thank you for listening and I want to thank the Massachusetts Center for Unexpected Infant & Child Death for hosting this beautiful event. I walk for my daughter and for all of your children, maybe they’re hanging out together somewhere laughing that we’ve all come together too.

-Maile Madigan, Lia’s mom