Love From Lydia: When a Mother’s Love Never Ends

The SUDC Foundation is honored to welcome Danielle Cristofano-Schwartz, LCSW, as our Director of Family Services. Danielle first came to the Foundation as a bereaved mother following the death of her daughter, Lydia, in December 2022. Today, she walks alongside other families with both professional expertise and lived experience, providing compassionate support during some of life's most difficult moments.

In this conversation with Will Carrington, SUDC father to Maria, Peer Support Group Facilitator, and SUDC Foundation Ambassador, Danielle reflects on Lydia’s life, the profound impact of child loss, becoming a mother again, creating a non-profit, Love From Lydia, and how grief has shaped her purpose. Her story is a powerful reminder
that while grief changes us, love never ends.

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

Danielle: My husband, Josh, and I had been together for fifteen years and married for six when Lydia Josephine was born on March 1st, 2021.  We were thrilled to have a girl, and I will never forget the intense love I felt when I first held her.  She was beautiful, absolutely perfect, and I immediately loved becoming a mom.  Lydia was always smiling and giggling. She loved our cats, the park, her baby dolls and toy kitchen. She loved pizza (“pizzi”) and watching Toy Story (“story”) or Finding Nemo (“fishies”) with us every weekend.

My family celebrated every Christmas Eve with the Feast of the Seven Fishes and it has always been my favorite day of the year.  We hosted the 2022 Feast and Lydia loved the food and the presents from my mom and my in-laws.  Because my dad had died three months earlier, my Mom was sad and uncertain about coming; however, I am grateful that we were all together on Lydia’s last day of life.  The next morning, on Christmas, Lydia wasn’t acting like herself. She was irritable, tired and unable to eat–we assumed she may have picked up a bug from daycare – and so we postponed opening presents and gave her an early nap.  Lydia died in her sleep on Christmas Day of 2022 when she was 21 months old.

We came home from the hospital that night to a house that felt isolating and horribly quiet.  There were signs of her everywhere, but she wasn’t with us. I felt like my identity as a mom, my favorite job in life, had been stripped away in an instant.

Will: Did you learn anything new about Lydia after she passed away?

Danielle: At the wake, Josh and I were so grateful as friends and families filed by Lydia’s casket to pay their respect.  We noticed a man we could not place and, as he came closer, he sobbed and struggled to keep his composure. He embraced us when he got to the front and shared that his daughter was in Lydia’s class at daycare.  He recalled a story, in which his daughter had been crying one afternoon and observed Lydia bringing her a baby doll and pat her on the back to console her. I am grateful that he shared this story with us.  We bereaved parents do not have the privilege of witnessing new stories about them.  It is up to those around us to help fulfill that for us in any way that they can.  When they die very young, there are few people who can offer those insights, as she was rarely out of our supervision (other than when she was at school).

Will: Were you able to maintain contact with the people who knew Lydia and mourned for her when she passed?

Danielle: I was unprepared for the secondary losses, i.e., the loss of connections with people I knew through Lydia.  It is difficult to watch these children grow up, knowing that Lydia will not get to, but it is comforting to stay in their lives because they were a part of Lydia’s. Some parents struggled with maintaining contact with me because I assume they worry about bringing up their child when mine is no longer here.  I don’t blame them.  Had I not been impacted so greatly by profound loss, I’m not sure I would have done anything differently.  We live in such a grief-illiterate society, and most people don’t know how to support others in grief. 

I remain close with friends that I had before Lydia was born and who have children that she knew and loved.  It was incredibly difficult at first to watch these kids play without Lydia, so I found myself avoiding them; however, after a couple of years, I began spending time with the children again.  I am now grateful that I can be in their lives, as
hard as it still is.  I am grateful that these friends also remind their children about Lydia, because, unfortunately, these kids no longer have their own memories of her anymore since they were so young when she died.

Will: Many SUDC parents struggle with whether or not to have additional children. What went into your decision to have another child – Sadie – in relatively short order?

Danielle: I couldn’t bear not having a living child and immediately wanted to have another baby.  So a few months later we met with a reproductive endocrinologist who – given my age, history of difficulty conceiving, and recent loss of Lydia – suggested that we pursue IVF. We could have the embryos genetically tested with IVF, thereby lessening the chance of additional losses, and freezing embryos would reduce pressure if we wanted to have additional children.

The IVF process is challenging, particularly in early grief, but focusing on having another baby gave me the hope I needed at that point in my life. I also think in a strange way that IVF, as arduous as it was, provided me with a sense of control that I was otherwise lacking.  I became pregnant in September 2023 with my second child, Sadie, and I am so unbelievably grateful for her.  Sadie brings me joy (amidst the grief I will always carry) that I didn’t think I could feel again.  She is exactly what I needed.

Will: Lydia’s death was ultimately attributed to a volvulus due to an undetected congenital defect. You found out that it is unlikely to be repeated in any future children you might have. How did those aspects of Lydia’s death affect your decision to have another child?

Danielle: It was comforting to know that another child would have no elevated risk of this defect, but we were still far more aware, due to the connections we have made with other loss parents and hearing all of their heartbreaking stories, that terrible things can happen. Once you learn the stories, you can’t unring that bell. I greatly miss the days before Lydia died when I was so naive about life. Despite all of this, being a parent to a living child again outweighed all of that anxiety for us.

Will: Please describe the organization you started in Lydia’s memory.

Danielle: I created Love From Lydia (a 501(c)3 organization) to support families after the death of a child.  I look at the time I spend on Love From Lydia as time spent with her. It helps me to feel closer to Lydia and that I am continuing her legacy. Some of the initiatives I have started include:

● A virtual support group on expecting a baby after child loss:  I yearned for a group like this when I was pregnant with my second child.  All of the pregnancy after loss groups that I found were for parents who had experienced perinatal loss, which was not appropriate for me to join.

● Scholarships for local therapists to obtain grief training in order to encourage an interest in specialization within the field.

● COPE (Connecting Our Personal Experiences): matches newly bereaved parents to others further out in their loss for guidance and support.  I also hold regular groups for the volunteers so that they can support each other while also helping others.

● Lydia’s hearts: Lydia was buried holding a little white heart that I had crocheted. Through the early days of my grief journey, I made hundreds of these hearts (an action that helped to keep me grounded) and began giving them to people who helped us before and after Lydia died. These hearts kept her connected to the physical world that she was no longer in.  Eventually, I began to attach the hearts to small tags, indicating to the person who finds it that they’ve been hugged.  I started placing these randomly in the community for people to find.  Now, friends and family bring these hearts with them on their travels and drop them places for others to find.  At this time, Lydia’s hearts have been placed in 41 US states and 45 countries/territories!  When someone leaves a heart somewhere, they share it with me so that I can pin it to the map (https://lovefromlydia.com/spread-kindness). It brings tears to my eyes to see how many places Lydia’s spirit has touched.  Lydia brought so much joy to our lives every day.  I hope others feel some of that joy when they find a heart.

● Book donations: Lydia loved books. In November of 2024, we dedicated a Little Free Library to Lydia at one of her favorite local playgrounds.  I visit the library every week and fill it with children’s books, crocheted hearts, stickers, bubbles, and bookmarks.

● Mini retreat: Typically, each year around Lydia’s birthday, I organize a fundraising event for Love From Lydia, but this year, on Lydia’s fifth birthday, I organized a free mini retreat for bereaved moms.  We started the morning with a sound bowl practitioner who focused on grief and healing.  We then offered time for connection and sharing food while we participated in therapeutic crafts.  It was a beautiful morning, and I loved connecting with moms over stories of their beautiful children. 

● Strengthen supports: We work with hospitals and other programs to strengthen their support for grieving parents, including resources and matching crocheted hearts with a letter from a grieving parent so that they know they are not alone.

Will:  How has being a social worker affected your response to Lydia’s death?

Danielle: For over a decade I worked at a special education high school and had a small private practice, and before that I worked in group homes and foster care.  I loved my job but, after losing Lydia– my whole world, it became hard to hear about petty teen drama every day.  My work with Love From Lydia showed me that I was most at ease with other bereaved parents.  So, I trained with grief expert David Kessler and also obtained a grief certificate through the National Association of Social Workers. Facilitating the ‘expecting a baby after child loss’ group became my favorite time of the week.  

Working with grieving parents would have been far from my mind before Lydia’s death, but you are no longer the same person after your child dies.  Part of me died with Lydia on December 25th, 2022, but I’m proud of who I have become, and I think Lydia would be proud of me, too.  

I’m grateful to be the Director of Family Services at the SUDC Foundation.  Because of my personal experience, I am passionate about the responsibilities of the position.  I have been on the other side of an intake interview, recalling the excruciating details of the worst day of my life.  I was a member of the group that I now facilitate.  I was the mom organizing my first fundraiser in memory of my daughter.  I feel that having those experiences allows me greater compassion and connection with the families I walk alongside as I support them in their own journeys.

I am honored to support the organization that supported me in those early days of grief when I felt most alone.  Throughout the years, even when I no longer attended the support groups, the SUDC Foundation continued to support me by remembering Lydia, reaching out, and encouraging me in my work with Love From Lydia. I feel rejuvenated and know that this is where I need to be at this stage of my life.  

I work every day around people who know about Lydia.  I never have to consider how to share that I actually have two children, not one, and that I am a bereaved parent.  In a way, I get to bring Lydia to work with me.  After the tragedy that has impacted my life tremendously, what more could I ask for in a job?