Our Story of Hope- The Hurlbut Family (Ella)

Our lives were forever changed when our twin girls, Anna and Ella, were born the morning of July 19, 2015 at 27 weeks.  Anna was born at 3:31 am and weighed 1 lb. 15.9 ounces and Ella was born at 3:32 am and weighed 1 lb. 15.8 ounces.  They were both immediately taken to the Neonatal Intensive Care Unit (NICU) and we were told to expect them to remain in the hospital for at least 13 weeks (until their due date).

We knew we had a long road ahead of us, but we were hopeful they would both come home with us.  I am a pediatric nurse practitioner, so I made it my full-time job to know every detail of their care.  After they were born, Anna seemed to take off and thrive, but Ella was the one who always seemed to struggle.  The doctors discovered that Ella had a large hole in her heart that needed to be closed.  At four weeks old, she had heart surgery to repair the hole.  She did amazingly well that following week and we thought she was finally going to catch up to her sister.  Our hearts were shattered when she developed a widespread bacterial infection at five weeks old.  She fought hard for two long weeks, but we had to watch her endure more pain than anyone should ever have to experience in a lifetime.  In the end, the infection was too much for her little body to overcome.  She passed away the morning of September 7, 2015.  My husband and I are incredibly grateful that we were both with her when she passed.  She took her last breath as the nurses moved her into her Daddy’s arms.  That was the first and last time my husband would ever get to hold her.

Something broke in me the day that Ella passed away.  I truly did not think that I was going to survive losing her.  All I kept thinking was, “Why is this happening to our family?”  I did not know how I could continue to live my life when one of my children was no longer here with me. How could I be a mom to our 2-year-old son, Luke, and to Anna who was still in the NICU?  I’ve always loved the poem “Footprints in the Sand,” especially the part where it talks about God carrying us through our trials.  Looking back, I realize now that the only way that I survived the first several weeks and months after we lost Ella was because God picked me up and carried me through it.

In those early days of grief, I remember thinking, “I’m not strong enough for this.”  I want to encourage you today by saying, “you are stronger than you think.”  2 Corinthians 12:10 says, “That is why, for Christ’s sake, I delight in my weaknesses, in insults, in hardships, in persecutions, in difficulties.  For when I am weak, then I am strong.”  So how do you put one foot in front of the other when you feel like your life has been shattered into pieces?  The answer I have come to learn is that you face each new day by leaning into His loving embrace.  Let Him be your strength.

I have always been an anxious mom but the fear that I experienced after we lost Ella was on a different level.  I constantly worried that something bad was going to happen to Luke or to Anna.  How could I possibly trust God to protect them when he didn’t protect Ella? I had so much anger towards God. We had struggled for a long time with infertility before we were finally able to get pregnant.  I did not understand how God would allow us to get pregnant with twins only to take one of them away.  I constantly cried out to God asking him why He didn’t answer my prayers to heal Ella.

In the last three years, God has slowly started to mend the broken pieces of my heart.  I can see now that God did heal Ella, just not in the way I wanted Him to. He gave us a miracle by taking her to her heavenly home.  I am learning that God does not promise that we will not experience disappointments in this life.  What He does promise is that He will never leave us, and He will be there to walk with us through that disappointment.  I used to ask God “Why me?” but now I have started to realize “Why not me?”  There is nothing special about me that gives me the right to assume that God will spare me from loss and heartbreak in this life.  Why do some people get cancer while others don’t?  Why do some people lose a child while others don’t?  I will never truly know on this earth why Ella had to leave us, but I realize now that God chose this path for me for a reason. 

I have discovered that I have two options now that Ella is gone. I can either stay bitter and angry for the rest of my life or I can ask God to use my experience to make me more faithful and to help others.  Because of my faith, I have hope that I will see Ella again. And because of my faith, I’ve found that I can choose hope.

My main prayer in the days after Ella passed was that I wanted her life to have a positive impact on others even though she was only with us for a short time.  I didn’t want her story to end with her death.  I wanted her spirit to live on.  We chose Ella’s name because it means “bright, shining light.”  Right before she passed away, I promised her that I would continue to spread that light to others as long as I am here on this earth without her.

I’ve always loved Barbara Bush.  I never knew that she also suffered the loss of one of her children.  I only learned that after her passing when I was reading a quote by her where she said, “The death of a child is so painful, both emotionally and spiritually, that I truly wondered if my own heart and spirit would ever heal.  I soon learned that I could help myself best by helping others.”  Barbara and I have this in common, we both found healing by helping others.

In the beginning this started out as small projects like donating comfort bears and butterfly blankets to the hospital in Ella’s memory.  Our most recent project was designing and opening the butterfly bereavement room at the Texas Children’s Pavilion for Women NICU in her memory.  This room provides the privacy and comfort that grieving families need when they have to say good-bye to their babies.  We pray this room will leave a lasting legacy in Ella’s memory and will be something that will help grieving families for many years to come.  

It brings me peace in knowing that there will be some good that has come out of Ella’s life.  That is my prayer for all of you today.  That you would be able to find the good.  It may not happen next week, next month or even next year.  But I pray that there will come a day when you can look back on the time you had with your sweet child and instead of those memories bringing tears to your yes, they will bring a smile to your face.  That you will be able to laugh again, to find joy again.

We chose butterflies for the bereavement room because we felt they were the perfect symbol of something that goes through a great deal of darkness yet becomes something beautiful.  That is my prayer for every grieving family that I have met along this journey, that they would make it through the darkness and come out changed for the better.  One scripture I have clung to is Revelations 21:5 which says, “Behold, I make all things new.”  

I still remember the moment we had to leave the hospital without Ella.  I felt this wave of panic hit me as we drove away and I told my husband, “I’m never going to be the same after this.”  Looking back over the last three years, I can tell you that I’m not the same person I was before Ella passed away.  God has used her death to change me and make me new.  

I will never understand why this is my story or why this is your story.  But what I do know is that this is the story we’ve been given, and with it, no matter how bruised and battered it may be, we have something to offer this world.  I truly believe that God has given me this story of renewal and hope for a reason, so that I can share it with others.  In sharing my story, I pray that other grieving families are able to find hope in the midst of their greatest darkness.