Journey 182: Philadelphia Phillies Anencephaly Awareness Night

This evening I bought two tickets to the Philadelphia Phillies baseball game. They will be hosting the San Diego Padres on August 29. I recently visited Philadelphia, and on the way back to the airport, we drove by the sports arenas. I saw where the baseball games are played. I can imagine the excitement, the cheering and chanting of the crowd, the crack of a bat against a fast moving baseball.

anencephaly awareness ballgame

I won’t be there to experience any of it, however. I purchased the tickets for another reason: August 29 is Anencephaly Awareness night at the ballpark. Part of the proceeds from the sale of each ticket, purchased through a special website, goes to Duke University Medical Center’s NTD Research Fund. And if 500 tickets are bought, through the website HERE, a pre-game video will be played, to raise awareness for anencephaly.

I do this for Shane Michael Haley, and his amazing parents, Jenna and Dan. I followed their incredible journey last year. They discovered during their pregnancy that their baby boy, Shane, had a rare disorder. Anencephaly is a neural tube defect in which the tube fails to close, resulting in the absence of a major portion of the brain, the skull and scalp. Babies who survive birth generally live a few hours. There is no cure for anencephaly.

anencephaly awareness shane

The news was devastating to Shane’s parents. However, they chose to continue the pregnancy and share life with Shane while he was in the womb. Dan and Jenna created “Shane’s Bucket List” and during the remainder of the pregnancy, they shared beautiful experiences with their son, crossing each item off the bucket list as they accomplished it. Shane was born on October 9, 2014, and lived for four hours, held, cherished and loved by his family for his whole life.

READ SHANE’S STORY

I was deeply touched by Shane’s story, and by the love and courage of his parents. I continue to check in on their Facebook page periodically, and was thrilled recently to find an opportunity to contribute toward research to understand and prevent anencephaly. I was happy to purchase tickets for the game, and donate them to someone in Philadelphia who can attend. Jenna and Dan have done so much to raise awareness for this disorder by sharing their soulful journey. I applaud them and surround them with hope, peace and love. As they have said, many times, “There is no footprint too small that it cannot leave an imprint on this world.” Shane Michael’s imprint has been huge and continues to impact others.

anencephaly awareness logo

We can all do something, in some way, for others. This is something I can do…buy tickets, cheer the Phillies on, vicariously, allowing others to sit in the seats I reserved. And raise awareness for Shane and anencephaly.

Purchase Phillies Tickets Here

Learn more about Anencephaly Here

Day 282: Baby Shane’s Bucket List

Shanes bucket list header

During this year of firsts, I’ve shared reviews of movies, poems and stories that have touched me and inspired me. Many of the films that I have most loved this year were based on true events and real people. I have also not turned away from movies or stories that were emotionally charged, allowing myself to share in the grief and sorrow, the joy and the overcoming of hardship that so many have encountered. For my first today, I am sharing a story that has deeply touched my heart. A true story, and not mine to share, in its entirety, however, I want to share the impact a baby boy named Shane, and his parents, have had on me.

I came across a Facebook page in August, called “Prayers for Shane”. Visiting the page I met Jenna and Dan, a beautiful young couple pregnant with their first child, a baby boy they had named Shane. During the 13th week, the couple found out that baby Shane had anencephaly, a neural tube defect in which the baby is born with part of the brain and skull missing. There is no cure for anencephaly and the life expectancy is a few hours to a few days for those babies who survive birth. In a few rare cases, children have lived for a couple of years. More than 90% of parents faced with such news terminate the pregnancy.

Not Jenna and Dan. Faced with that choice, they chose to not only carry Shane to full term, but to celebrate his life. Wanting to create as many life experiences as possible with their son, they created Shane’s Bucket List and have shared their amazing journey with the world via Facebook and Twitter. Dan said they “accepted his condition for what it was and decided to give Shane all the love we could while we had him with us.”

As Shane grew, week by week, in the safety and comfort of his mother’s body, the bucket list journey continued. Their adventures included taking Shane to a Phillies baseball game, visiting the Philadelphia Zoo, touring the 9/11 memorial, the Statue of Liberty and the Empire State Building, and attending a Zac Brown Band concert. Mother’s Day, Father’s Day, and mom and dad’s birthdays were celebrated. The parents visited some of their favorite places, talking to Shane while he was carried lovingly in his mom’s tummy, sharing memories and creating new ones. All in all, the little family checked off all 30 items on Shane’s Bucket List, completing it in early September.

I was undone and inspired by this couple’s courage and devotion to their unborn son. The prayers that they requested weren’t for Shane to be other than who he was. They requested prayers that they would make the most of the time given to them with their son. And indeed, they have. They gave Shane 9 months of unconditional love and shared experiences. They created a life with their son that was full of joy and expressed gratitude for that time. Like so many who have followed their journey, 831,587 of us as of this posting, I longed for a different outcome to this story. I wanted them to have months and years with their boy, rather than minutes and hours. I came to a place of deep peace for them, as the time of Shane’s birth drew near. I too accepted that this is who Shane was, and that he was fulfilling his purpose and destiny. I realized the amazing and far reaching impact his brief life has had on so many. In terms of love and impact, his has been a big life.

Last night, I sat up late, with many, many other people around the world, as Jenna was in labor. At last I went to bed, keeping my phone nearby. I checked it at 4:00 am and found that Shane Michael Haley had made his entrance into the world. Oh, he had already won my heart. Now I could see this beautiful baby boy, held in the arms of his smiling mommy while a proud daddy hovered over the two of them. I smiled, and thanked God, and thought of the three of them as I drifted back into sleep. When I awoke later, I checked for another update. Shane’s dad had posted the following:

Today at 6:15 a.m., after meeting his entire family and being baptized into the Catholic faith, baby Shane died peacefully in his Mother’s arms. We are so grateful for the time that we were blessed to hold and hug our son. The support and prayers we have received from all of you have been amazing and we want to thank each of you with all our hearts. Shane spent his entire life in the arms of people that loved him unconditionally and I don’t think you could ask for a more beautiful life than that. He is home now with the Lord and will forever be our little miracle!”

In spite of all that I knew to be true for Baby Shane and for his extraordinary parents, and all the peace and joy I felt for his life, I cried. The tears were simple grief expressed for a life that seemed too short. But, oh what a life. And what a journey. Thank you, Jenna and Dan, for sharing it and for your transparency, love and courage. And thank you, Baby Shane… because of you, I am changed.

Shanes bucket list no foot too small

Meet Jenna, Dan and Baby Shane here