An Adventure of a Lifetime

By Jenna Gassew

One thing that I believe many people can relate to is music. I love music. It has a way of bringing me back to a place or time that once was, where I can relive the past.  One such song is Tim McGraw's “Live like you were dying.” I’ve always loved that song, but now it reminds me of my son, Shane Michael Haley, who passed October 9, 2014. The lyrics strike a chord in my heart and leave me in tears but I love it.

He said I was in my early 40's,
With a lot of life before me,
And a moment came that stopped me on a dime.

I spent most of the next days, lookin' at the x-rays,
Talkin' 'bout the options and talkin' 'bout sweet time.

Asked him when it sank in, that this might really be the real end.
How's it hit ya, when you get that kind of news.
Man what ya do.

And he says,
I went sky divin',
I went rocky mountain climbin',
I went 2.7 seconds on a bull name Fumanchu.

And I loved deeper,
And I spoke sweeter,
And I gave forgiveness I've been denying,
And he said someday I hope you get the chance,
To live like you were dyin'.

These lyrics never hit me so hard until April 10, 2014. That day I received news that my son, Shane Michael, had a fatal birth defect. He was diagnosed with Anencephaly and would not survive outside the womb for long. For a day or two I felt lost, angry, upset, and scared. The day before Dan and I went to the doctors, I had set up our onesies birth announcement to share with friends that we were expecting, and now I was told that my baby would not survive. Instead of buying diapers, bottles, and bibs we were now looking at planning a funeral for our only son. My heart wasn’t ready to handle saying goodbye. That day, his diagnosis day, I will never forget. My eyes were heavy with tears and I couldn’t even handle looking at a baby without thinking of losing my own. I remember getting back from the ultrasound only to have to tell Dan the news. I couldn’t even muster up the right words but I told him, “We’re going to have the baby but he won’t make it.” I don’t think Dan was prepared to hear those words because his face flashed white and his eyes looked helpless. He hugged me and we just sat and cried for about an hour. It felt as if a part of us both died that day. We wanted someone to tell us it was going to be okay but in reality we knew we were up for a long tough journey. As first time parents we were ill-prepared to handle such a diagnosis but looking back I think we did the best we could for both each other and our son.

We decided to get away for the next couple days and drove to the shore. I remember how quiet that ride was before deciding that we needed to share with the world how proud we were to be parents of this little baby, regardless of his diagnosis. We knew we wanted him or her to be treated like any other baby, but we also knew our child needed prayers. Dan posted this birth announcement, 

“Jenna and I are happy to announce that we are expecting a beautiful baby in October…We recently learned our baby was diagnosed with a condition called Anencephaly and we are asking for your prayers… We are both extremely proud and thankful that God has blessed us with this baby and we trust in His plan for our lives and the life of our child…Thank you for all of your prayers and support!.” Many of our friends and family offered kind words and prayers, but didn't know that Anencephaly is a fatal birth defect. 

We spent the rest of the weekend just trying to make it to the next moment, while picking each other up.



“How's it hit ya, when you get that kind of news. Man what ya do.” 

It was then that those lyrics hit me harder than they did the day of his diagnosis.
 In a way they kind of picked me up. If our son was going to spend most of his life inside my womb, why not take him to all the places we dreamed of going with him after he was born? Why go on mourning after the diagnosis when he was still very much alive? That’s when we decided we were going to start a journey together, as a family. We created Shane’s bucket-list and our first trip was to Rehoboth beach in Delaware. We then traveled to the Cape May County Zoo in New Jersey. 

Our trips continued and, soon enough, the world began following Shane’s adventures through social media. His bucket-list adventure included trips to the shore, our favorite parks, New York City, Phillies games, Flyers games, and our favorite, Dad’s baseball games. His journey brought more awareness to Anencephaly than we could have ever imagined. His facebook page, “Prayers for Shane”, became his virtual scrapbook page for those around the world to join in welcoming one tiny little miracle.

On October 9, 2014 at 2:25 in the morning we welcomed our little miracle into the world. 

He was baptized into the Catholic faith and spent his whole life surrounded by family. He fought for four long hours and I can tell you my little boy was beyond beautiful. We held him for twenty seven hours after he passed and loved him more with each passing second. I remember looking into his eyes the moment I saw him thinking, “I wish this journey would never end. I wish we had just a few more hours or days to even create some more family memories together.” I knew I could never have enough time with him but how blessed was I to have experienced a lifetime of happiness in four short hours.

As I sit here today on the sixth month anniversary of Shane's birth, I think about the lyrics from Tim McGraw's song and I am thankful that we took our son to so many places and created so many family memories together. That song will forever be the anthem to Shane’s life in my eyes. Tomorrow will be the one year anniversary of his diagnosis and to say that his diagnosis day hasn't changed my life would be a lie. 

This time last year I was scared and upset, wondering how we were going to go on with our son for the following months only to be forced to say goodbye. Tomorrow I go into the day hoping to remind myself that no diagnosis can end a lifetime of love and memories created by our family and friends. I know it will be a tough day, just as it was last year, but I am proud to say that we celebrated every single second of life our son gave us.

Death is inevitable and how we chose to live our life is up to us. Instead of us teaching our son, he taught us that each day is a gift and that there is truly no foot too small that it cannot leave an imprint on this world. I am thankful for not only the four hours that our son gave us after his birth but also for the 39 weeks and four days that he spent kicking, hiccupping, and traveling with us in the womb. Though our pictures may fade, his memory will live on forever. His life was spent in the arms of those who loved him and traveling the world together as a family. He knew only love. 

To my beautiful son:

Thank you for giving your Dad and I a lifetime of happiness and love for the brief time you were here on earth. Thank you for changing our lives for the better and teaching us to live every day to the fullest. We love and miss you more each day. We wish we could just kiss those sweet cheeks one more time. We love you to the moon and back.

Love Always, 
Momma and Daddy

~ ~ ~

Jenna Gassew is from outside Philadelphia, Pennsylvania. She is a graduate of Rosemont College with a degree in Mathematics. She is the mother to a beautiful little boy in heaven, Shane Michael Haley. Shane was diagnosed with Anencephaly at 13 weeks gestation. Jenna and Shane’s father, Dan, decided to create a bucket-list on which they took Shane to various places such as Phillies games, New York City, and Ocean City, Maryland. Shane was born October 9, 2014 and lived for four precious hours where he spent his whole life loved. She continues to bring awareness to Anencephaly in honor of her son. More about Jenna, Dan, and Shane’s journey can be found on  their facebook page, “Prayers for Shane.”