Celebrating Nora Pepper Macdonald

As many of you know, two years ago today, I gave birth to my daughter, Nora Pepper. We didn’t know it at the time, but she would come to us with a very rare brain disorder called Ohtahara Syndrome. It would be the reason for her death sixteen days later. In the two years since Nora lived and died, I’ve gone through what feels like an entire lifetime.

Our gorgeous Nora girl. These pictures were taken when she was five days old, before we knew.

Losing Nora was the worst thing my husband, Todd, and I, have ever experienced. Our son, Theo, was 21 months at the time. We suddenly found ourselves reading a lot of picture books about death. An urn showed up in our living room. We went to an event put on by the Children’s Hospital bereavement department and released monarch butterflies. To this day, Theo says, “Sister Nora turned into a butterfly.”

It has been two years, today, since she was born.

Since then, Todd has started two restaurants, then left the traditional chef lifestyle. Now he works an honest-to-goodness 9-5 doing recipe development for a restaurant group in town. He cooks us dinner every night.

My editing business is having the most successful year ever, beyond my wildest imagination. I now work with eight absolutely amazing individuals. I’ve launched another company, a podcast, a forum, and a YouTube channel. There are even more big plans on the horizon.

Theodore the Goofball. This is immediately before he bowled me over into the grass.

Theo is thriving at a Spanish immersion preschool. He’s so funny. Like, so funny. And wise. We read books to him every day. He got a bunk bed this week and ran around the house, squealing with pure glee.

My family is complicated. Three months after Nora died, my father passed away from, as Kurt Vonnegut called it, “cancer of the everything.” But it brought me back in touch with my stepmother and half-sister. Three weeks ago, my stepfather suffered a massive stroke, a life-changing, and potentially life-ending event. But it brought my mother and I—uneasily, tenderly—out of a long estrangement.

And finally, we have Finn.

It’s impossible to have a bad day with Finny’s gorgeous smile.

Finn is a joy. He’s approaching 10 months. He’s always smiling. He has a gleam in his eye. He’s pulling up to stand. To be perfectly honest, if things hadn’t taken the turn they did, Finny-Doodle probably wouldn’t have come into our family.

Now we can’t imagine our lives without him.

Every year, I like to turn Nora’s birthday into a force for life and positivity, since it was the most godawful thing I’ve ever experienced (even though there were surprisingly beautiful things about it). Nora never got the chance to create a measure of good in the world, so I work to keep her memory alive.

The year she died—2017—I asked for donations to the Children’s Hospital Foundation. We were powerless against Nora’s condition, but our family raised over $20,000 to allow Children’s to help other families. Last year—2018—I asked for donations in Nora’s memory to Now I Lay Me Down to Sleep, an organization that allows families suffering infant loss or stillbirth to receive professional photographs of their brief time together. When they sent me the stack of cards with all the names of those who had donated in Nora’s memory, I shuffled through them all and wept.

This year, I’m directing anybody who wants to do some good in Nora’s memory to the Good Story Grant. My vision is a monetary gift of $2,000 to one or more writers that the Good Story Company is offering for the first time in January/February 2020. The first grant is fully funded, but depending on donations, which have already started to come in, we may be able to offer it more than once a year. The grant is accepting applications now.

The grant’s objective is simple: My team and I will review pitches from writers about how the money will help them get to the next level on a writing project. As long as it has to do with creative writing and there’s some accountability in the form of a timeline, deliverables, and letters of recommendation, we want to hear about it. If you’d like to help me support one or more writers every year, you are welcome to donate here.

Thank you for your support throughout the years. I truly love you, my amazing Kidlit crew, and I can’t believe that you help me live my dream every single day. I’m very sad that Nora isn’t with us, but the last two years have been truly incredible, in no small part because of you, my dear reader.

19 Replies to “Celebrating Nora Pepper Macdonald”

  1. Thank you for sharing your story once again. I’m sure this is a hard day for you, but I’m glad that you have your little men to bring you joy in the sad moments. And what a wonderful tribute and opportunity you will be giving to one or more writers – thank you.

  2. This is beautiful. Thank you for sharing your story and thank you for doing good in the world. It’s truly moving to behold.

  3. Thank you for sharing your story. I dropped out of the kid lit. world slowly over the past several years until last year completely when my adult daughter who had to move home had a perfect storm of health issues reside in her brain and impact her cognition, mobility, and and vision for life. It’s quite the story to live in and through for her and family. Giving up writing was needed and a death sentence to my soul. With encouragement from my writing community, I’m coming alive again. Your personal story gives hope to others and especially me.

  4. Thank you for sharing so honestly and hopefully. What a journey! And thank you for all the advice and resources you provide on the blog, in your webinars, and now through your new company.

  5. Mary, thank you for sharing this heartbreaking and beautiful story. I’m glad things have turned out positive in the end. You have a lovely family, such cute boys! I wish you the best and many blessings. Thank you so much for all you do for writers. I (and I’m sure plenty of others) really appreciate you, and all that you do!

  6. Dear Mary, sending you tons of love and gratitude for sharing your story with us. You’re a strong, kind-hearted woman with a beautiful soul. Many blessings to you and your family, now and always.

  7. Beautiful and heartbreaking, Mary. I remember when you lost your precious Nora Pepper and I was so devastated for you. The photos you had taken then were beautiful and I’m sure you cherish them. How you soldiered on through that grief is amazing to me and the life you’ve built since then is too. I’m sad to hear about the other losses in your family, but hopeful for you that the reconnections with family will foster much love and support moving forward. Thank you for sharing your story, your inner bits, with us. You’re an inspiration and everything you do is appreciated.

  8. Dear Mary and Family,
    What a jewel Nora was and is still.
    Reading your story stirred my emotion and I am in tears. The loss of child is truly sorrowful. She had a bundle of possibilities that are not to be in this world. I’m happy that you are paying tribute to her and hopefully you will continue forever (privately or publicly). Although painful at first, the joy of little Nora will wrap around the sorrow that surfaced at her departure to complete a life in your hearts.
    Hope and Blessings!

  9. Mary, you are one brave lady with so much to be sad about, and you still have accomplished so much. Congratulations on your daring little redhead. I love redheads–I have one too but all grown up. Enjoy your men as much as you can. Your Nora Pepper was a daring baby that you will remember always. God bless you and your family.

  10. I love you guys so much. I will always cherish the memory of holding Nora Pepper! Her photo in my home reminds me of her every day!

  11. Love and peace to you and your family, Mary. I love the idea of the butterfly release – and how sweet that Theo has a memory of his sister turning into a butterfly. It sounds like it could be a spread in a beautiful grief picture book that you could write. Keep up all the great work!

  12. Mary, I am a newer follower of your blog so hearing the story of the loss of your precious daughter touched my heart, today. The memory of her will never leave. When I was nine, I lost a younger sister to Blastanoma. It is amazing how creative outlets help, so I wish you the best in all that calls you in memory of her. And the gift of caring for your family.

  13. Thank you for sharing your story. It is heartbreaking but beautiful. Nora has inspired so much love and generosity. I love Theo’s version of his sister, and I imagine he’ll always see her presence in the butterflies he encounters. What a poetic gift. Much love and care to you and your family. You navigate these hardships with such grace in spite of the sadness.

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