Today, on what would’ve been her first birthday, I’m remembering my daughter Nora Pepper. For those of you who don’t know, Nora was born with a very rare birth defect on this date, November 30th, in 2017. It was a complete surprise to us because her condition didn’t show up on prenatal imaging or testing. Unfortunately, hers was a terminal diagnosis. She died on December 16th, 2017.
The Taboo of Baby Loss
We had a little more than two weeks to create memories as a family, and include our son, Theo, then 21 months, in Nora’s short life. During that time, we hired a professional photographer, the wonderful Sarah Wroblewski of Sarah Ann Photography, to come take pictures in our home. Now that Nora is gone, these pictures have become touchstones for our family that we will treasure forever. That sounds like such a cliché, but in this case, they really are all we will ever have. They mean everything to us.
We had our favorites made into a photo album. (In the blur of grief, I just sent a big batch to Shutterfly and used their “I don’t care, just make me an album” service. It actually worked out better than expected!) Our photographer gifted us with an absolutely stunning album as well. This morning, we sat together as a family and showed both off to Theo, then talked about his sister and how much we love and miss her. The photos will be part of our tradition on her birthday for the rest of our lives.
The last year has been difficult but, ultimately triumphant. Theo is an utter joy to us, now a wild and rambunctious 2.5-year-old. We savor even the most mundane moments with him in ways that we didn’t before. My relationship with Todd, my husband, is stronger than ever. I’ve done a huge amount of inner digging, and grown into a person I never would’ve been without this experience. The editorial business is thriving and I get to do what I love every single day.
Another facet of the last year has been connecting with other loss parents. The “Dead Baby Club,” as I jokingly call it, is a club nobody ever wanted to be in, but we are. After I posted about Nora’s death, I heard from so many of you who’ve lost pregnancies, babies, or children. Nobody talks about this kind of shattering loss. Children aren’t supposed to die. It breaks the natural order.
But they do. Sadly, so sadly, they do.
When this tragedy happens, parents sometimes feel alone because it’s too terrible, too impossible to talk about. The world wants to shield its eyes and pretend. There’s a cultural taboo surrounding the topic. So, all too often, we suffer in silence, except when we meet another family in our shoes.
Coming Together
This has gotten me thinking about community, and reaching out to other loss families who have experienced the unimaginable. I remember what it was like to be broken open in the most vulnerable moment of my life, sitting there in the hospital that Monday evening, and learning that Nora would absolutely die. There’s just not a lot of support for a family on that horrible day.
As the anniversary of Nora’s birth and death rolls around, and I’m thrust back into these memories, I want to tell you about a cause that means a lot to me, if you’ll listen. This year, my family has made a donation in Nora’s honor. I’d love for you to join us, if you feel at all compelled. While I can’t personally be there to support families facing baby loss as it’s happening to them, there’s an organization that does just that.
And it does something else incredible. It provides them with tangible memories of a life gone too soon: those same kinds of photographs that mean the world to us now.
A Request in Nora’s Honor
Now I Lay Me Down to Sleep is a nonprofit organization that you may never have heard of. I hope that’s because you’ve never needed them. They service any parents in a hospital setting who are facing stillbirth or neonatal death. They provide a network of photographers who will come at no charge to the family, at all hours of the day and night, and take pictures of the baby and family. These pictures are usually heart-wrenching. But beautiful. And oh-so-significant to families who may only get to spend a few precious moments with their babies.
My family didn’t personally use their services. We brought Nora home initially, because we didn’t know exactly what was wrong. We had photographs taken there. But if we’d spotted her condition earlier, we probably never would’ve left the hospital. From experience, I know how amazing it is to have pictures of my baby. I never thought I’d lose a child. But families experience it every day. Now I Lay Me Down to Sleep serves them in their time of most desperate need. It supports photographers who volunteer their time and talent to step into the worst moment of a person’s life. Think about walking into that room for a moment.
Please excuse me for using my platform for a cause. But I want to help Now I Lay Me Down to Sleep and enable them to do their very important work, if I can. If you feel so compelled, please make a donation to Now I Lay Me Down to Sleep in Nora Pepper Macdonald’s name, or the name of any other child who survives only in your heart.
We’re thinking about you today and every day, baby girl!
My thoughts & prayers are for you & your family. I feel your grief, your love, and your new strength via this tragic loss.
I was thinking of Nora Pepper just the other day. ♥️
Mary Ann Duke
Sending strength and thinking of your family. Thank you for sharing.
Thank you for sharing a little of Nora Pepper with us. My heart is with you and your family.
What a beautiful tradition for your family. Peace be with you.
My heart goes out to you.
She ‘s beautiful. What loving memories, and no, you cannot be faulted for supporting such a wonderful service that helps keep those memories with you forever. Peace.
Thank you for sharing. My thoughts and prayers are with you and your family.
My thoughts and prayers are with you and your family. It is a beautiful tradition.
Mary,
Thank you so much for sharing your story. No doubt this will help other families as they move forward in their unexpected journey. I also appreciate the information about the nonprofit. Such a great organization I am happy to support.
-Kristan
I remember before I became a mom, hearing about how a baby died and thinking at least they were so little, it must not have been as hard on the family as losing an older child. As if they are less of a person if they don’t walk and talk and have a favorite food yet. After I had my first baby I realized how wrong I was. We spend months and months getting to know that little human flopping around in our bodies, and we work so hard to take good care of them and bring them into the world. They absolutely have a little soul that we’ve spent so much time getting to know and nurturing. I’m so so sorry for your loss. It’s amazing that you can channel your grief into love and support for other families in your position.
Such a devastating loss. I cannot imagine your heartbreak.
So admire your courage to reveal the very personal on this professional site. No apologies needed. Thanks for sharing with your writer crew, and sending thoughts during this anniversary month.
Beautiful Nora. In the end LOVE survives.
Thank you for your post about Nora. It’s been 42 years since my mother lost my baby brother at birth. It was Dec 17, 1976. His loss is still felt today. I wish “Now I Lay Me Down To Sleep” had been around then. We have no pictures, except of his casket, but we have our enduring love for him. My thoughts and prayers are with you and your family.
Oh, Mary. Thank you for sharing the story of your beautiful Nora Pepper. That sweet little face. And thank you for the opportunity to make a donation in her name.
Mary, I had no idea, and I am so sorry. This is such a touching tribute. My heart goes out to you. I will definitely make a donation to this necessary organization.
Sending strength and peace to you and your family, Mary.
How lovely to remember her birth, as a celebration of her life. Although December 16th will be hard, it’s the fact that she was born and loved that matters most. Love and strength.
Heart wrenching… a courageous post… I’m glad you have found hope in this unfathomable loss.
My mother lost a baby girl at birth two years before I was born, and while we have not spoken much of our loss, it is nonetheless felt.
So sorry for your loss, Mary. What a blessing to have such a special time with Nora Pepper. And what a touching and generous offer for those facing grief. I’m sure you are a great encouragement to others experiencing loss of a child. My heart and prayers go out to you . . .
Dear Mary. My tears are flowing for you and your family. What a beautiful, beautiful little Nora. Thank you for sharing the photos and your poignant story. I will make a donation for this compassionate work. Bless you all.
Dear Mary,
Words, which normally flow have difficulty expressing how sorry I am for your loss.. I know what it is like to lose someone you had so many dreams for. Not only for them but for you and your family as well. I send you love and know deep down to the very bottom of my soul that there is a reason though we have trouble finding it through such grief. I once read a story of a little boy who lived for just 3 days and his life inspired the father in ways he would have never imagined. I pray that you too find the same peace, as I have since hearing it. I would love to share his story with you one day, if or when you would like to hear it. With love, Dianne
This breaks my heart, again. There is joy. In your marriage. In your family. And so much love seeps from your words. Bless you and your family.
Mary,
Oh, sweet Nora Pepper! She’s beautiful! My mother lost a baby boy before me and she still talks about him. We have close friends who lost their baby boy when he was 11 days old. So heartbreaking. My thoughts and love are with you and all who have lost a baby. Blessings!
Nora’s life may have been short, but it was full. Blessings to you and your family.
I’m deeply moved by your family’s love and courage. What a beautiful baby Nora was. My parents lost a three month old son to a birth defect many years ago. I only wish the organization you have recommended had been active back then. To have these photos is so very special.
Many blessings to you and your family, and I am honored to donate in Nora’s name.
I can’t think of a better use for a platform. Thank you for sharing your story of “beauty for ashes.” It makes me want to love better and give more.
Dear Mary,
Thank you for sharing Nora’s story with us. She was indeed a beautiful little girl–and what a loss. My son died almost eleven months ago. Though he was older than Nora Pepper, the taboo exists for those children and their parents, too. People don’t know what to say, so they often say nothing at all. I applaud your courage and commitment to open up the topic and offer a lasting remedy for families.
Such a beautiful baby with a beautiful name. Thank you for sharing – Sadly, I too belong to the club. One thing good that has come out of it is that I now do not fear reaching out to someone who has lost a baby.
hugs to you and your family.