Hello, dear readers! Before Thanksgiving, I wrote about the upcoming addition to our family, a little girl that was born on November 30th, to join big brother, Theo, 21 months. I’ve always been very honest, as a person. And I’ve always shared what I’m going through on the blog. Like the loss of my beloved cat Sushi, or the fertility journey we took to start building our family. Not only is it therapeutic for me, but I genuinely believe that truth brings people together and helps us all feel a little less alone.
It is with deep, deep regret that I’m sharing the following news.
When we brought our beautiful Nora Pepper home, she was extremely lethargic. We had the doctors in labor and delivery, several pediatricians, a home health nurse, and a lactation consultant on our team, and they all said she was just sleepy because she was born at 37 weeks. That can take a lot out of a gal! They all told us, “In the magic of time, she will wake up.”
And in 99.99% of babies, they would’ve been right. There’s an expression in medicine: “If you hear hoofbeats, don’t think of zebras.” Doctors advised us as if we had a horse, but we actually had a true blue zebra on our hands. A week later, Nora was still not waking up to ask for food, and feeding her from a bottle was an hourlong ordeal every three hours. She was only taking 1.5 ounces each time, and barely. Her weight was down. I had a sinking feeling all along in my mother’s heart, and I finally insisted that we go to the hospital. Luckily, we live 15 minutes from Children’s Minnesota, a world-class facility that sees a lot of very complex neonatal cases.
After ruling out any acute causes of lethargy, like infection, we were left with something much more devastating. A chronic condition. Physically, our wonderful Nora was absolutely perfect. Everything was formed beautifully. And I’m not just bragging as a proud parent about her ten elegant fingers, her curly eyelashes, or the softest newborn hair I’d ever kissed. We had all the x-rays and MRIs in the book, and she was physically flawless.
But due to a rare, random, and terribly cruel congenital condition, Nora had a pattern of brain wave activity that was incompatible with life. Or at least a life that involves any cognitive awareness whatsoever. It’s likely that her brain was built like this from the start, had never functioned in any other way, and never would. The evidence-based data on this type of brain wave pattern is invariably grim. In short, this state has been described as “the worst pattern short of electrical silence” and “a preterminal finding”.
We took Nora back from the NICU, and we had two beautiful days with her. Our plan was to repeat the brain scan after a week and enter hospice care at home if the findings were the same. Nora had other ideas, and she let us know that she was ready to go ahead of schedule. We spent our last hours together as a family, making sure that all she ever knew in her brief time was pure love. She passed peacefully in our arms on December 16th, 2017.
I believe in miracles. I do. Snow on a quiet morning is a miracle. My son’s laughter is a miracle. The overwhelming love and gratitude I feel for Nora, even as her condition has put me on the loneliest and most difficult road I’ve ever walked, is a miracle. Unfortunately, there was not going to be a medical miracle. The sad but simple truth is that, Nora never would’ve been able to experience all of these things about life that are miracles. Not in this case. Even in the magic of time, she never would’ve woken up.
My husband, Todd, and son, Theo, and I are tremendously blessed. We have the support of friends and family, we both have meaningful work to help us feel human, we’ve found strength we never knew existed inside ourselves. Because Nora’s prognosis is so rare and so dire, we were invited to participate in a comprehensive research study where her entire genome was sequenced. We didn’t end up finding out if her condition was genetic or due to some very nuanced brain anomaly, but maybe, in some small way, she will help another family down the road because of what the research team can learn.
Her diagnosis was Ohtahara Syndrome (Early Infantile Epileptic Encephalopathy), and while it can have many causes, it’s most likely random, and about 80% of families never learn the exact reason behind it. This has been a bitter pill to swallow, especially with such a rare syndrome and drastic presentation, but it helps to know that we are not alone.
This is a post I never thought I’d have to write. All any of us can do when the road turns dark is to keep going. I’m grateful for the opportunity to call Nora Pepper Macdonald my daughter. She always will be. Even as my heart is broken, it is somehow more full than ever. If you’re reading this, you’re part of why. Thank you for listening to our story.
Credit for these beautiful photographs belongs to Sarah Ann Photography, and they were taken before we found out. We are thrilled to have these treasures, we will cherish them for the rest of our lives.
People have been asking, so we’ve decided to encourage friends and family to make a donation to the Children’s Hospital and Clinics Foundation. The incredible people of Children’s, from her neonatologist to her palliative care nurse, were some of the most outstanding human beings we have ever met. We never felt alone for a moment, and we still don’t. You can designate your donation to a specific care area. We would prefer the Neonatal Program, the Neuroscience Program, or the Pain, Palliative and Integrative Medicine Program. Or you can give to a fund for urgent hospital and patient needs. Children’s wasn’t able to help Nora due to her prognosis, but it is our dream as a family that they may help others in her honor. Please be sure to let them know that you are giving in memory of Nora Pepper Macdonald. If you are so compelled, please donate online, or call them at 952-992-5509.
You are stronger and braver than anyone I know. God bless you and your family.
My deepest condolences, Mary. I am so sorry for your loss. She was a beautiful little girl, and our world was richer the short time she was in it. May her memory be blessing. My thoughts are with your family.
Thank you for sharing your heart-breaking story of beautiful Nora. Your strength and grace during this difficult time is an inspiration to others. I wish you and your family healing and love.
What a beautiful tribute to your little Nora. I’m so sorry to read this. Be well as you travel this difficult journey, and may you be surrounded by loving and caring souls.
What a beautiful post. Thank you for sharing. I will be praying for your family in the coming weeks.
My heart breaks for your family. It brings back memories from a decade ago when I desperately prayed for a medical miracle for our baby girl. The words whispered to me were: “She is already a miracle.” And I knew, like you’ve beautifully expressed here, that there would be no life-saving miracle, but that the whole experience — her conception, her delivery, her short life, our grief — was a beautiful miracle.
A decade out, I can say that you will never get over losing your child, but you will get through it. But oh, how it hurts. May you enjoy these precious moments with sweet Nora and be lifted up in your pain through it all. We won’t forget her.
Thank you for sharing Nora’s story. Your words are beautifully written.
I’m so very proud to have a woman like you in my life and as a friend! I’m always here for you!
Oh, Mary! My heart, like yours, is both broken and brimming full. I wish there were something I could do, but it sounds as though this is beyond human hands. I admire your courage and your honesty, and will pray for all of you in the coming weeks. May your hearts find peace and may every moment you have with your beautiful little girl be filled with love.
Nora is beautiful. I will be praying for your family.
This is so heartbreaking to read. I am really sorry. I admire your grace and courage.
My god. I’m so, so sorry. I’ve read your blog for a few months now and, in the way that can happen with blogs, feel like I know you now. I wish there was a way to gift wrap some extra strength and send it to you, the way I’m sending off other holiday packages. Just know that a random stranger in California is thinking of you and your family today and hoping that you find moments of peace and grace in the upcoming days.
Thank you for sharing, Mary. Nora is a beautiful girl and I am sorry her time hear will be short. I will keep your family in my prayers.
Thank you for sharing your heart with us, Mary. What an incredibly beautiful post. Keeping you and your precious family in my prayers.
Mary, there are no words aside from you and your family are in my prayers. I too hope your days with your baby girl are filled with love and as much peace as possible.
So very sorry. She is a beautiful baby. My thoughts and prayers are with you and your family.
Enjoy your time with your little girl. It might help to keep a journal of your days together. ❤
Mary your strength and beautiful words for your daughter have moved me in ways I can’t articulate right now. Thank you for sharing your story, and Nora with us. My heart and prayers go out to you and your family. She is so lucky to have had you all.
I am so sorry, Mary. You are in my thoughts and prayers. I know that you and your men will make every moment with Nora special and that she feels loved.
Such a beautiful little girl and family. Thank you for sharing your story. Nora’s precious life is a miracle, and while her presence is physically short, she’ll be eternally loved.
I’ll pray for comfort and wisdom for your family over these next weeks.
I have only just reached out to you for a query edit and now read this story. In the last five years I have had family members deal with cancer and the passing over of several loved ones. I think the most important word you used in your beautiful telling of Nora’s story is LOVE. I too believe in miracles. Sometimes they just don’t happen in the way we expect. Blessings to you and your family.
Candra
Thank you for sharing the story of your beautiful Nora and family.
You are such a courageous, sincere mother to share this with us. I will keep you and your family in my thoughts during this time of beautiful love and heartache.
Saddening yet beautifully joyful in the spirit of your hearts. The overwhelming feeling must be …what…what word can I use, sweet sister? But my heart is with you and will see these precious photographs of your family, of Nora Pepper, of Theo kissing her, of the love that surrounds her. Your words are hard yet filled with love. Your words dive deeply to my heart as your pictures of each and all of you go deeply there too. I hold you all in prayer and thank you for allowing me to be a part of this path you are on.
Caring through Christ, ~ linda
Oh sweet Mama my heart is heavy for you and your family. Your words are a gorgeous memorial of the bittersweet journey of parenthood. I know that Nora Pepper chose your family because she knew she would be surrounded by and wrapped in the pure love you gave her. Thank you for sharing this and please let your community hold you up. I am here for anything whether it is a meal, a hug or an ear.
Thank you for sharing your story. Its so amazing how you are able to remain so strong. God bless you and your beautiful family. Sending prayers, hugs and endless love your way!
Mary,
We are so sorry to hear of your loss. Your words are powerful and beautiful. I have been weeping for 5 mins straight.
We will keep you all in our thoughts, and hope if you need anything we can help with, that you won’t hesistate to ask.
Our deepest sympathies.
Please extend our love to Todd.
Thank you for sharing this beautiful tribute to your dear little daughter, Nora Pepper. As you said, sharing life’s journeys bring us all together. My husband and I admire greatly how your family has put love at the center of everything. We send warmest thoughts and prayers of support to you all.
I am deeply saddened to hear this. My heart goes out to you and your beautiful family. May little Nora rest in peace.
~ Your past client (and longtime lurker)
Such a touching tribute to a child too soon gone from your life, but also a tribute to you and your family. We suffer such great losses in our lives, and yet we move on. How brave we are. Thankfully, your family is loving and caring and together. My heart goes out to each of you.
I am so very very sorry. Prayers for you and your family. <3
Heartbreaking, but beautiful, story of love and family and loss. I’m so sorry for the pain and loss you’re experiencing.
Sending so much love and strength. The world is better because Nora Pepper was in it.
Blessings to you and your beautiful, beloved family.
Life is a mystery, Love is all, and you are living the miracle of loving and being loved. Thank you for sharing your truth, your beauty and your pain – you have made us all wiser and stronger. May your life be full of love and deep joy!
Thank you for your heartfelt, honest, and courageous post. Hugs to you and your family.
I am so sorry, Mary. My condolences to you both. My heart pours out to you, and I appreciate you sharing this heartbreaking story. I am glad to see how strong you are. All the best to you both.
I am so, so sorry. The beauty of your daughter, the courage of your words–I am touched and saddened. I hope it helps just a little to know that in sharing your story, we’ve gotten to know Nora and you–and what love is–a little better.
Thank you for sharing. Each time you share, you lighten your burden a bit because there are so many others who now share your loss. My mother’s heart goes out to you and your family. My mother’s arms want to hold you and grieve with you. God bless you.
Your candid post reflects the courage and warm spirit in your heart. I do believe Nora’s story will bring strength to others and to your family.
Oh Mary. What beautiful words, ones which I’m sure many people will find healing themselves. Thank you for opening up and sharing them. Love and hugs to you, you are a lovely human being and we are lucky to have you in this world!
Oh, Mary. I’m so sorry. Your words show you’re finding beauty and love in the hardest of moments, and I can see that you’ll survive this and be stronger for it. But it’s a lot to live through. I wish you love and strength and support.
I’m so sorry to read this beautiful but heartbreaking tribute to your daughter. May she rest in peace with the love you and your family gave to her.
My heart breaks with you. I know there are no words to say to make you feel right, but know you have a community of people (who don’t even know you personally) who grieve with you.
Our prayers are with you, our love too.
Thank you for sharing this.
Mary: Thinking of you. I’m so sorry your time with Nora was so brief. It is clear she will be forever loved.
Dear Mary,
I am so sorry to hear of your loss. Nora was a miracle, and as someone above said, she was blessed to be born into a family that would make her short presence here one of pure joy. I’m sure that one day you will see her again in heaven, never to be parted again.
With deepest condolences and many, many prayers for you and your family,
Laurie
May her light shine through your strength to cast light and bless others. I’m so sorry.
My deepest condolences Mary to you and your family. I can only admire the courage you have mustered through this difficult time.
Sincerely,
Brenda
So tremendously sorry for this heartbreak.
I am new to the website as of last week, and I cannot even imagine what you are going through.
Stay strong, breathe love in and out every moment, and contemplate in nature.
Mary, my heart aches for you. I can’t imagine the pain and loss you and your family must be feeling. Thank you for sharing your words with us. I hope it helped, even just a little, to tell Nora’s story. Please know you are in my thoughts. All my love to you and your family this holiday.
Oh Mary, I’m sobbing for you. I just can’t believe this. I’m so incredibly sorry for your loss. The pictures of Nora Pepper are beautiful and I love her name. Your last post was so powerful and inspiring and to now have had to write this. I wish I lived closer to leave dinner on your door step. I’ll be thinking of you and sending love to Nora Pepper. XOXO Sarah
A beautiful tribute to your beloved daughter and baby sister, Nora. My condolences to you and your family
Mary,
I am so sorry for your loss. Please know that you and your beautiful family are in my thoughts and prayers. i appreciate your blog in many ways and today it touched me in an even more profound way.
Blessings,
Mary
What a beautiful girl and a heartbreaking and wonderful post. I am so sorry for your family’s loss and send you love and strength as you walk this very sad path.
Sending lots of love to you and your family. Nora is beautiful and your strength is inspiring. Thank you for sharing your story.
Oh, I’m so very sad to read this. I hope that sharing this news and reading all these lovely messages help you in some small way.
Mary,
I am so sorry for your loss. I wish you and your family strength. Thank you for sharing about beautiful Nora and her life.
Dear Mary,
Nora flowered for you to see her beauty and chose your family to provide her first true love- how precious. She parted for a bigger perfect world where all is gloriously alight and beautiful and pure. Love,peace and joy embrace and surround her.
As God walks with you may His presence- His comfort and peace be tangible to you and yours and as you reflect on His love for Nora and her big brother, daddy and mummy may you rest in Him.
Dear Mary,
With such a sad and heavy heart, I extend my deepest condolences. Know you and your family are in my thoughts and prayers.
Sincerely, Dianne Caplin
I remember crying through your post about Sushi years ago, and now I cried through this one. I am so, so sorry for your loss. You have so much strength to share your too short time with Nora with us. I know it has reminded me to appreciate what I have and not take things for granted. Sending your family love and light.
Thank you for sharing these beautiful words about Nora. As a mother, I was tearful as I read most of the post. Your family are in my thoughts and prayers.
Thank you for your transparency. I am praying for you, Dad and big brother to feel God’s comfort and, in time, joy.
Mary,
What a beautiful post. Nora knew she was loved. Her spirit will return in a healthy body. I will keep your family in my meditations as you grieve for what will never be.
Your journey and that of your family into the heart of the sacred takes my breath away. When I was four-years-old my mother gave birth to my brother, whose particular birth defect was incompatible with life. He has been my guardian angel ever since. I believe that Nora will be with you and your family–always, watching over you as angels do.
What a heartfelt, loving tribute to your little one. The tender moments you and your family spent with Nora must have been very comforting to her. I’m so sorry for your loss.
What a precious tribute to sweet little Nora Pepper. I’m thankful you had some special time together, and beautiful photos to remember her by. It’s never easy to lose a loved one. I’m praying you will be comforted during your days and weeks of grieving for your dear one. Thanks for sharing your heart and life with us, Mary!
Such a beautiful tribute to a tiny bright light! My heart goes out to all of you. I’m so glad you have such gorgeous photos. Hugs, prayers, and tears go out to you!
I cried all throughout this beautiful tribute. I am so sorry for your loss. My heart breaks for your and your family. God bless you always, Joan Sloane
Mary, your strength and grace inspire me. Your commitment to sharing the truth reminds me why writing is so powerful. This generous gift of Nora’s story has given each of us a sliver of the miracle she is. I know I will remember her story for a very long time. Will keep you and your family in positive thoughts.
I admire your grace and courage in sharing this beautifully written and heartbreaking story. With tears, I send my warmest thoughts and prayers in support of you and your family.
My heart breaks for you, but I am buoyed up by your words of peace and love and gratitude. I will keep you and your family in my thoughts and prayers.
This is heartbreaking. Peace to you and your family.
I’m so sorry for your loss.
My heart aches for you and your family. Your little Nora had beautiful hair. Babies are always a miracle, and bring joy. I wish you peace this Christmas, and am so glad you have family and dear friends near.
Mary, I am so sorry and sad to hear of your loss. May the days you spent with Nora remain a huge blessing and joy to your family, and I wish you much comfort during this time of grieving. You’ve reminded me that we should be hugging our loved ones tightly every chance we get.
So sorry to hear of your heartbreaking news. Sending deepest sympathies to you and your family, Carol Simon Levin
Oh Mary, I am so sorry for your loss. My heart goes out to you and your family. Your words are full of grace and beauty. Remember just as we share our experiences, community is also about helping when you are in need. Please reach out if you need anything!!!
My heart breaks for you and your family, Mary. What a beautiful tribute to your daughter – and what a lucky little girlie to have such a loving, loving mother and family to surround herself with during her time here. Lots of thoughts and prayers for you and your family.
I’m so sorry to hear this, Mary. What a beautiful tribute you’ve written. Sending my sympathies.
Oh, Mary, Your heart breaking story has left me without words….yet I can say that you gave your beautiful Nora, the most wonderful gift anyone could hope for: to be wanted and Loved ❤️
Peace to you and your family, Mary.
Thoughts and prayers to you and your family.
What a beautiful tribute to a beautiful little girl. I am so very sorry for you loss. Sending much love to you and yours.
You and your family are in my thoughts. It is a brave, beautiful heart-rending post.
I had just read a post announcing the Top 100 Children’s Books Blogs, and saw you were Number 2! Shortly after that, your post popped up in my inbox and I thought, Oh Mary must have just heard the good news. But no. Oh Mary. What a heartbreak. I’m glad you had the courage to share dear little Nora Pepper’s story and the beautiful photos with us. I can’t imagine your sorrow. Prayers to you and your family as your lives continue.
Mary:
There are no words. I’m so sorry. Please know I’m thinking of you and your family.
I’m a longtime reader but rare commenter. And oh, Mary, my heart is breaking for you. Love and warmth and all the good thoughts going out to you and your family. Nora is absolutely lovely and those photos are gorgeous. How lucky that you and your family got to spend that time with her.
Mary. There aren’t any words for this. You have my deepest sympathies. So sorry for your heartfelt loss. God Bless.
Dear Mary,
Your profoundly sad news brought tears. You had your little Nora for a tiny breath of time. Thank you for showing us what courage and gratefulness looks like emerging from heartbreak. Whenever I hear the name Nora I will think of your daughter.
Blessings, Cynthia Wetzler
Mary, I’m so terribly sorry for your loss. How incredibly brave and eloquent your post is – I’m sure it will inspire others in similar situations. Sending my deepest sympathies and thinking of your family.
I’m so sorry for your loss. Thank you for your bravery in sharing your story. Nora was a lovely baby.
Thank you so much for sharing what you and your family have experienced. My prayers are with you all.
I am so sorry for your loss, Mary. Nora was such a beautiful baby. Wishing you and your family strength and peace during this period. My deepest condolences.
A touching and inspiring tribute for a little baby girl who brought such joy in such a brief amount of time. I’m so sorry for your loss Mary. My thoughts are with you, your husband and son.
Dear Mary,
I feel your pain, anguish, and sorrow. My 17-year-old son, and only child, passed away around this time last year. I wish you and your family well in your grieving and everlasting joyful memories of Nora.
What strength you had to write this. I am so sorry for your loss, and may your strength sustain you and your family while you remember and love Nora, always.
Speechless. My heart goes out to you and your family and tears shed for a little one that knew only love and warmth in her life. Grateful for words, once again, that you were able to use to share your loss, pain and love and that allowed all of us to know Nora and love her, too. Wishing you strength and love in your days ahead.
I am just catching up on email and blogs and am so sorry to belatedly send condolences. What a bittersweet story. Sending love to your family.
How precious to have these cherished photos to document your time together as a family. Thank you for so honestly sharing your story.
May you and your family find comfort in your memories and beautiful images of your time together with Nora.
May she rest in peace.
My deepest sympathy, Mary.
I am so very very sorry for your loss. Be so gentle with yourself right now, in everything you do. God bless you and your family.
I am moved by your story. Unthinkable. Thank you for sharing . You have a beautiful family.
Thank you for sharing your beautiful little Nora with the world. My heart is broken for you all. My deepest sympathies.
Such a heartbreaking and heart-filling testament to love and life and hope. Bless you. Thank you for sharing your darling Nora Pepper with us.
I’m sorry I missed this post when you wrote it. I am devastated.
You do have a beautiful family and a luminous, generous spirit to have shared. I have no doubt you will continue to give of your light, and honor Nora thus.
My heart reaches out to you during this difficult time. This doesn’t mean anything, but 25 years ago my son was born, and 21 months later my daughter was born — in December. May the angels surround you and your family in a beautiful blanket of comforting Light
Thank you for sharing your joy, your sorrow, and the beautiful pictures that encompass both. May the Lord hold you close and always, even as he holds dear Nora close.
Oh, I’m so sorry.
I wish there was something I could do to make the pain go away.
It’s amazing you’d share your short precious time with your daughter with us.
Your family is in my prayers.
All my love to you and your loved ones, Mary. Your stirring words and the photos with Nora Pepper are beautiful. I hope you are finding peace. Nora was lucky to have the Macdonald family as her very own for the short time she was here on earth.
I am so, so sorry. God bless you and your family. <3
I am so sorry for the loss of your beautiful daughter. Your honesty and courage in sharing your story brought me to tears.
God bless you and your family. Thank you for sharing sweet little Nora Pepper with us. My heart goes out to you.
I’m so sorry that I missed this post, Mary, and I feel deeply for your loss. Thank you for sharing your beautiful, heartfelt story with us. Your vulnerability, courage, and strength is inspiring.
May your sweet Nora continue to shine brightly in your hearts and radiate her love out as strength to you and your family. My thoughts and heart are with you all.
Such a beautiful tribute to a family suffused with love. he best family that Nora could be born into for her very brief life. May peace be with you always. Thank you for sharing.
Mary,
My deepest condolences to you & your beautiful family. While I will never know how this feels, I did have 4 miscarriages and every loss of a future life is something no Mom or Dad wants to experience.
Nora truly was perfectly beautiful and thank you for sharing. Your courage to do so has touched so many and I’m sure she had her own special reason for coming into your life. I’ll send prayers to aid in your healing, and I know you’ll find a way to keep her alive through your writing.
In fact, you already have.
God bless
I cried at your strength, your courage and the both the tragedy and blessing that was Nora’s life. Mary I will continue to pray for you and your family’s strength and peace.
The sad story of your family tragedy touched my heart. I truly hope you can find some peace in the memory of the love you and your family shared with sweet angel Nora Pepper.
Dear Mary,
I’m sitting at a small cafe surrounded by a garden that could easily house a fairy or two. I’m observing the miracles around me while my heart is so heavy with sadness for your family and your beloved, Nora Pepper. I’m desperate to get the check so I can go to my car and cry for your loss. Mary, I’m so, so sorry for your loss. Your photos are so beautiful. I will keep you and your family in my prayers. Sending you as much love and light that my heart can hold.
I didn’t know that I had tears that large until now. My heart is filled with Nora and your story.