When I Rode on a Float in the Rose Parade to Honor My Son's Incredible Gift

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I sat there in complete awe of the events unfolding around me. It was like I was in a dream. I had a smile on my face so wide that it actually hurt. My momma’s heart overflowed with pride. With one hand I waved vigorously to a sea of faces, with the other I held tightly to an eight-by-10-inch picture.

On January 1, 2016, I had the amazing privilege and honor of ringing in the New Year by riding on the Donate Life float in the Rose Parade in Pasadena, California. Although it was a joy to ride, I did not ride for myself. I rode in honor of the person framed in that eight-by-10-inch photo.

My son.

My sweet, precious baby boy.

After a brief 1-hour-and-20-minute dash of life, my son became a donor. Saying goodbye to your baby shortly after birth isn’t something most parents are faced with, but it was part of our reality. For us, making the choice to participate in donation made sense and brought healing. Despite my son’s small size and the fact that he did not qualify for transplant donation, he was still able to give his pancreas, liver, blood, skin samples and whole body to researchers. My husband and I were extremely proud. In the 3.25 years since his passing, we have learned that his gifts have made a huge impact. New equipment has been developed. New techniques have been documented. A new procedure has been passed through the Food and Drug Administration. Lives of other babies are literally being saved because of him and his gifts.

Yes, my momma’s heart overflowed with pride that day as I sat on the float.

three people sitting on float and waving
Bethany riding the float with two other loved ones of donors

During the incredible ride down Colorado Boulevard, I did my best to make eye contact with people in the crowd. Most people would smile and wave excitedly. Their eyes would then move from mine to the picture I carried in my hands. They would stare for a moment, realize it was a picture of a baby, and be touched by what that picture meant. It meant a baby had died and became a donor.

Many of these strangers would send me a look of sympathy and say, “Awwww.” Others would turn to the person next to them and say, “Look, a baby!” Some mouthed “Thank you” to me, or placed one hand over their heart and waved to me with the other. Other people’s eyes filled with tears. Each time a person in the crowd was moved by seeing my son’s picture I wanted to jump off the float and tell them his story. I wanted to tell of his short yet wonderful life, and how his legacy lives on. I wanted to let them hear the momma’s pride in my voice… Instead I smiled as much as I could, hoping my face would convey all that I wanted to say.

Now, as I sit at my computer, I struggle to express just what it meant for me to be able to ride on the float. Yes, it was a momentous, fun, once-in-a-lifetime event, but for me it was more than that. It meant my son was being recognized, remembered, celebrated and honored. More importantly, it was an opportunity — an incredible opportunity.

By riding, I was able to be an advocate for donation, specifically neonatal donation. It allowed me to shine a light on donation for research, an option often overlooked. (In fact, my son is the first research-only donor to ever be represented on the Donate Life float.) It gave me the chance to represent all the other neonatal donors and their families who have given – specifically, the over 50 neonatal families who have given to research since my son’s donation in September 2012. It let me raise awareness for both infant loss and for my son’s condition, anencephaly. It let me show the world that even a brief life can have a lasting legacy. It allowed a seed to be planted in the hearts and minds of people watching — the realization that a baby can be a donor! Although I was not able to share my story with each person in the crowd that day, I believe just being there, holding his picture, had an impact.

I will forever be grateful for the opportunity that I was given to represent so many things and to honor my sweet boy by riding on the Donate Life float. It was truly a “proud momma moment” for me, something that, as a loss mom, are few and far between. As I finish typing, I must confess that I still have a smile on my face so wide it actually hurts, and my momma’s heart continues to overflow with pride!

To learn more about neonatal donation, please visit Purposeful Gift and the International Institute for the Advancement of Medicine. To learn about organ donation please, visit Donate Life America.

A special “thank you” to the organizations who selected me to ride on the float and sponsored our trip: the Musculoskeletal Transplant Foundation and the International Institute for the Advancement of Medicine.

woman holding photo of baby in front of float
Bethany holding a photo of her son in front of the Donate Life float
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How This Boy Born With a Partial Skull Proved Doctors Wrong

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When Jaxon Buell celebrated his first birthday on August 27, parents Brandon and Brittany Buell were quite emotional about the milestone event for their little boy.

Jaxon was born without most of his skull due to a type of anencephaly, which is a neurological condition that affects approximately one in 4,859 babies born in the United States each year, according to the Centers for Disease Control and Prevention. The CDC notes that “almost all babies born with anencephaly will die shortly after birth,” and the Buells told The Daily Mail that doctors didn’t expect Jaxon to survive the pregnancy.

 

 

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Jaxon spent the first three weeks of his life in the neonatal intensive-care unit at Winnie Palmer Hospital in Orlando, Florida, but it wasn’t until he was nearly a year old that doctors at the Children’s Hospital in Boston, Massachusetts diagnosed him more specifically with microhydranencephaly, reports Boston.com. This diagnosis helped doctors find the best possible medications for Jaxon, who had been struggling to sleep through the night and having episodes that resembled seizures.

 

 

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My Son Only Lived for 80 Minutes, but He Helped Save Many Lives

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His life was brief. Only 80 short minutes. There was nothing we could do to save him. No procedures could fix the missing parts of his skull or brain (a condition known as anencephaly). We could only love him, celebrate his existence, and embrace the time we had with him.

The author with her husband and son

We did everything we could to make the most of his life, but since we could not prevent his death, we wanted to embrace that as well. To do this, we chose to allow our son to give back by participating in organ, tissue and whole body donation.

After our sweet boy passed, he was able to donate his liver, pancreas, umbilical cord blood, core blood from his heart, a skin sample and his whole body, all for various research studies. Due to his size and condition he did not qualify to donate for transplant, but we were more than happy to donate to research.

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The author's son

Yes, I miss my son. Yes, I wish we had been able to spend more than 80 minutes with him. Yes, I wish anencephaly was not part of our reality. But, that is not how our story was written.

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I am thrilled to think that my son helped researchers come one step closer to finding a cure for debilitating conditions. I am happy for the families that will not have to say goodbye to their little ones and experience that heartbreak because of the new procedure our son helped develop. I am so thankful to say my son was a donor. For us, participating in donation added an extra layer of meaning to our son’s brief life.

My boy, Amalya Nathaniel (meaning “work of the Lord, given by God”), was indeed mighty! I couldn’t be more proud.

My husband and I established a nonprofit, Purposeful Gift, to teach families about various types of donations and offer them resources and support. To learn more about neonatal organ, eye, tissue, and whole body donation, please visit our website.

To see a documentary of our story, please visit iiam.org/Amalya.

Update from the author — After having our son in 2012, my husband and I have gone on to have two healthy children. We love parenting all our children — our son in heaven, and the sweet girls we have with us on earth.

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My Daughter Was Alive for 23 Minutes, and Every Second Was Beautiful

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Twenty-three minutes.

That’s how long our daughter, Lyla, lived.

Twenty. Three. Minutes.

That’s shorter than I had hoped, yet longer than I expected.

Let me explain.

At our 20-week ultrasound, my husband and I learned we were having a girl. We also learned she had a terminal defect called Anencephaly. Our daughter was missing the majority of her brain, and this was not compatible with life. She had a brain stem, which told her heart to beat and gave her body movement, but she would not live.

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I was blindsided. This was my first pregnancy, and the joy that filled our hearts suddenly turned into despair. I had two options — be induced at 20 weeks, give birth and be done. Or — carry full term (which was completely safe for me to do) and meet our daughter, who might not be born alive — and if she was born alive, she would only live for a short while. We’d have to say goodbye as quickly as we had said hello. Those were my choices. Just those two. I ached for a third choice, silently begged for one that would mean life. But a third choice never came. My heart was broken.

I mean, sick-to-my-stomach, don’t-get-out-of-bed, weep-at-a-moment’s-notice broken. Some of the worst moments of my life. I remember lying on the floor at home and weeping because that’s all I could really do. Flat out, on my face, weeping for my little girl.

I decided (and my husband stood by my choice) to carry Lyla full-term, in hopes to say hello (if only for a moment), hold her in my arms, hopefully hear her heart beat and tell her how much I loved her.

But in the midst of all the anguish, in the midst of the storm, the sun began to shine ever so slightly. The moments of sadness were softly sprinkled with joy.

This may sound crazy, but the nine months and 23 minutes I knew this little gal were life-changing. Real. Raw. Eye-opening. Breathtaking. Beautiful. Bittersweet. Wild. And filled with joy.

Michelle Nagle and her husband, Tim, with their daughter, Lyla

Our sweet little babe.

We came to some sort of understanding that this short existence was to be her story. A long life wasn’t her tale to tell. We turned her brief time here with us into a gift, a blessing to us that we were even able to know her (in the womb) and hopefully for a short time on her birthday.

Yes, my heart was filled with so much sorrow, but Lyla reminded me what real joy felt like and that you cannot know one emotion without the other. Lyla made it known in my heart that life is fleeting and my loved ones deserve to know how much I cherish them. Her sweet little soul encouraged me to express my love to my family and friends. Even now, when I talk with those I love, the conversation usually ends with an unashamed “I love you.” Lyla taught me that. Her tiny existence spoke volumes. She slowed down sweet everyday moments. She reminded me to stop and watch the sunset, listen to birds chirping, appreciate the “death” of winter because it simply meant new life was coming soon, to fill my life with laughter, to cry without shame, to love with abandon, to speak up, to listen, to hear others, to try my very hardest to journey through life with a nonjudgmental heart. That everyone deserves joy, everyone is worthy of kindness, everyone deserves their chance to speak, everyone needs love. It may sound crazy that an unborn baby taught me these things, but she did. And it brings happiness to my heart.

Michelle Nagle and her husband, Tim, with their daughter, Lyla

Lyla was born on June 20th, 2007.

She was placed immediately in my arms. I asked the nurse if she had a heartbeat, and her answer was yes. I listened to that slowing heartbeat, and my heart was overcome with sorrow and peace.

For 23 minutes, I held her in my arms, I kissed her cheeks, touched her fingers and toes, loved on her with every ounce of my soul, shared her with my husband and listened to her heartbeat slowly fade. And then stop.

Without a doubt I wish she was here. I ache for her and wonder what she would be like, what she would look like, what she would sound like. This June, Lyla would be 7 years old. And I miss her still. But I do not stay in the sorrow too long. I search for the things she taught me, the people she touched. I tell her story when I can, to those who will listen. I remind them to love one another and love with their whole heart. I’m reminded of Lyla in beautiful moments, in songs we sing at church, in the love I see families express towards one another, in rainstorms, in beautiful blue skies, in quiet moments of reflection, in laughter between friends, in the sweet love I have for my husband and daughter, Eden, and the love they have for me. I am so glad I met her.

Because of Lyla, life is full and beautiful and brighter and sweeter and richer. It’s full of heartaches and disappointments, but also full of peace and joy, thankfulness and laughter. We have a 6-year-old daughter, Eden, who is the treasure of my heart. I truly believe I love her in an even deeper way because of my sweet Lyla. She still affects me today, and I hope she always will.

“When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.” Kahlil Gibran

Miss you, sweet girl. Thank you for everything.

Love,

Mom

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