HAILEY’S STORY
Written by her mom, Katie Shaw

Four months after our wedding Lucas and I received the wonderful news that I was with child. This was a gift from the beginning; we were ready and excited to pour all our love and wisdom unto our child.

The next few months were not unlike that of any young mother to be; exciting in many ways: what will the future hold for our child, is this a boy or girl busy growing inside, and when will I be getting my next nap? I was constantly encouraged by my sisters that after the first trimester, I would feel much better. I knew the gift that awaited us was well worth it all and more.

December 22, 2006, the day after Denver, Colorado received 3 feet of snow, I plowed my way to the doctor’s office to have my first ultrasound. As I had my first glimpse at the life within me, a startled nurse said, “You have a real big baby!” At first I was a little concerned, but was then pleasantly surprised to find out my pregnancy was just more advanced then we had previously thought. We were almost out of the first trimester. That day I left the doctor’s office so happy and with a deep sense of fulfillment after watching that little heart hard at work. Lucas and I were able to share our first pictures of Hailey with both our families during Christmas.

We were so excited and had already started to dream of Hailey’s first words and steps. We went in for another ultrasound to hone in on a delivery date on January 31, 2007. I was anticipating discovering if our little pumpkin was a boy or girl. As I got situated, I distinctly remember saying to the technician, “You must have a wonderful job, except when you have to pass on bad news.” It wasn’t but 10 minutes later that she hastily left the room saying she had to get the doctor.

Suddenly our dreams were put on hold when the doctor came in and said, “There is a very serious problem.” The obstetrician was able to get us into see Dr. Wexler, an ultrasound specialist, that afternoon who confirmed Hailey’s condition, a severe developmental disorder. Dr. Wexler told us we were expecting a very beautiful and a very special little girl.

How suddenly your world can change.

After conferring with the specialist for several hours, we returned home that night to hold each other. We opened the Bible to find these words of comfort:

“And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God had poured out His love into our hearts by the Holy Spirit, whom He has given us.”
Romans 5:2-5

The following morning, we spoke with the obstetrician. He told us we should abort our child, but in sensing immediate opposition, he proceeded to change his word track. We were told that I may become blind, die, or experience other life-threatening conditions if I were to carry this child. Upon hearing these words, our hearts stopped and we felt a deafening isolation trying to steal our daughter and our hope away. Fortunately, we were able to speak with Dr. Wexler, the specialist from the previous evening, and he stated categorically, “You will not be harmed carrying your child.”
Without any discussion, Lucas and I instinctively knew our daughter’s name. And we said it aloud for the first time: “Hailey Elizabeth.”

Further tests awaited us the next few days. The news did not improve, in fact Hailey’s condition and prognosis worsened. After viewing the various films, not only did Hailey have an encephalocele (her brain was not forming properly), but it also seemed that Hailey’s entire skull was not forming properly.

Lucas and I flew to Ann Arbor, Michigan the next week to be seen by Dr. Ham, the head of Neurosurgery at Children’s Hospital in Detroit, as well as a team of doctors at Mott’s, University of Michigan Children’s Hospital. The neurosurgeon, Dr. Ham, was furious when he heard the comments from the obstetrician in Colorado. Dr. Ham entirely disagreed with the obstetrician who told us my life was in danger; the same obstetrician who was so fixated on terminating Hailey’s life. In addition, Dr. Ham said he unfortunately sees countless parents with similar experiences when their physicians are faced with the inconvenient truth of a child’s prognosis.

A full fetal MRI confirmed Hailey’s condition as being inconsistent with life outside the womb. All the doctors, during our visit to Michigan, affirmed the value of Hailey’s life. They gave us direction so we could receive the support we would need in the difficult months that lay ahead.

We were relieved to know that both Hailey and I were safe; however, our plans and expectations for Hailey’s life were forever changed. My husband, Lucas, said he often wondered what choice he would make if ever confronted with this situation. When the choice confronted him now, in its unavoidable entirety, he was able in courage and in faith to emphatically say, “There really is no choice. This is our daughter and this is our life with her, NOW”. It wasn’t the hard choice we thought it might be. There was only one obvious path for us to take; Hailey Elizabeth’s lifetime, however brief, is to be filled with love.

Hailey, Lucas, our dog (Cousteau), and I decided to take an adventure together. Lucas was given a job opportunity in Greenville, South Carolina. At 6 and a half months pregnant, we packed up our belongings and started the long drive across the country. Hailey was greeted with open arms by Dr. Shelly Chapman and our nurse, Meredith. Everyone immediately fell in love with Hailey’s kissable lips, so clearly seen in the 3-D and 4-D ultrasound images. And there was no doubting that Hailey was blessed with her father’s ears.

Hailey danced
We’ve been blessed to see Hailey smile and play. Her kicks and tickles still bring us joy. And I am convinced she has an impeccable sense of humor. I sang Hailey songs. One of which was made just for her. And together, Hailey and I often danced to our song “In High Tide or in Low Tide”.

Hailey loved listening to her Dad read stories of a devoted lion, magic, and adventure. When Dad fell fast asleep, Hailey and I would read of a young boy and his bear, which goes by the name of Pooh. Aunt Amy had a story written for Hailey about the Princess of the Fairies, which Aunt Amy loved to read to her as well.

Hailey went fishing with grandpa and shopping with grandma. She enjoyed watching the Greenville Drive at her first baseball game; although, Hailey was not a fan of the hot dogs. Hailey loved juice (especially orange juice), cucumbers, and she made her father search far and wide for a caramel apple in the month of May.

Hailey’s final passage into this world began on July 5, 2007. The care that the nurses, Kendal and Michelle, gave us at Greenville Memorial Hospital was impeccable. They made sure that we were supported, comforted, and they provided us with the love we needed during those treasured moments.

After a long labor, Hailey made her first appearance. On July 7, 2007, as the night turned to early morning, Hailey let me tickle her toes as she made her way into our arms. We were once told that there would be peace when we held our daughter. And I think it may be truly impossible to adequately convey the feeling in that room. There was peace and joy, smiles and tears. The stillness and wholeness of love has never been so near to me. With her soft skin on mine and with a beautiful sigh, Hailey reached up twice with both her arms to say hello and goodbye.

Hailey’s Aunts and Uncles gave her a unique family nickname: “Miraculous Meerkat.” I think they choose this name “Meerkat” to signify how close Hailey has brought our family together, and “Miraculous” to symbolize the divine wonder that her precious life undoubtedly represents.

Hailey once again surprised us all. Her condition was more complicated then everyone had previously thought. Hailey had a genetic disorder. She did not have a complete set of genes and in her condition Hailey had less than 1% chance of making to full term. Lucas and I were told that there could be up to 50% chance of this happening again in our future children. Probabilities have the power, if you let them, to bestow comfort or fear. But we cannot forget that Hailey defied all odds. With her strength and with the grace of God, she was given life. I truly believe that your children carry you through the hardest moments of your life. I know as Lucas and I move forward, our angel will be with us.

The presence of the Lord has been walking with our family on this bittersweet journey. There is fear at times but there is always hope. Every moment of Hailey’s life has been worth fighting for. Hailey has shown us the miracle in every moment and has taught us compassion for all who suffer or feel alone. Sadly, in a society preoccupied with perfection the true perfection and dignity of every life is all too often overlooked.
It’s not right for a mother and father to have to surrender their role as caretaker and provider so soon. However, we will always be Hailey’s parents. No experience in this life or in death will separate our bond. Some say Hailey’s untimely death is a tragedy because we never really got to know our child. They couldn’t be more wrong. Lucas and I know Hailey like no one else. As a father dreams of his children and finds fulfillment in their accomplishments, so too does Lucas. As a mother knows her child’s needs and moments of joy, I too know Hailey’s.

Everyday, in more ways than I could possibly mention, we are reminded of Hailey. Among the ocean of reminders the significance of a butterfly’s presence will never lose its’ importance. As we laid Hailey’s body to rest, her cousins were eager to give a very special gift to the little girl they have been hearing so much about. They all opened their boxes to release forty-eight vibrant monarchs which were to accompany Hailey into her new heavenly home.

I said a prayer at Hailey’s funeral and continue to pray for her to this day.

Dear God,
With you now is our brightest memory; the most precious thing to have touched our lives. Thank you for the gift of Hailey Elizabeth.

From the moment we knew of her presence, Hailey has taken our breath away. We have a new understanding of happiness in watching Hailey grow, in feeling her bumps, in glimpsing her yawns and smiles, and in singing and dancing with her. Please be sure that Hailey always knows of the love she carries with her and that she is never alone.

The gift of our time with Hailey has taught us the miracles within every moment, and the immensity of a parent’s love.

We pray that Hailey is washed with tears of joy, and that she always finds the peace and the happiness she deserves in your arms. Kiss away all of her worries. Let Hailey know that her mommy and daddy will soon again be holding her.

Lord, we know that we all have lessons to learn in life before our time comes to be with you. Thank you for our daughter’s lesson to be the greatest of them all: the lesson of love. In her short life, Hailey has created and given this world more love than anyone I’ve ever known. Shower her now, and always, with the same love she has poured out to others.

Let Hailey’s smile be a light to all and her laughter the music at heaven’s gates.

Amen