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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.

Ella at 4 weeks old.

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.

Anna’s newborn picture (she was actually four months old because we waited for her to come home from the NICU before having the pictures taken)- she is holding the picture of Ella.  The girls never had their picture taken together so this picture meant the world to me.

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.  

This picture was taken around their 1st birthday, and our photographer added Ella’s shadow.  This meant so much to me, because we never got a picture of all 5 of us together.

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.  

 This was taken around their 3rd birthday. Anna is holding our Ella bear (the bear that was given to us on the day that Ella passed away) and she’s touching a purple butterfly. The purple butterfly is the symbol for the loss of a twin so butterflies always make us think of Ella ?

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.

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My Story of Hope- Amanda Miller (Madelyn)

April 10th, 2013 was one of the best days of my life. Madelyn Mary
entered my world. My heart, my soul would never be the same again.
Bright blue eyes, strawberry blonde hair, rosy cheeks, she was
perfect in every way.

My pregnancy with Madelyn had been uneventful. Just like some
newborns, Madelyn was jaundice at birth, but overall, she seemed like
a healthy little girl. After the standard couple of days in the
hospital, we went home. Madelyn was dressed in her pink elephant
pajamas, the sun shining. It was truly a beautiful day.

During Madelyn’s, initial pediatric checkup, I mentioned to her
pediatrician that although Madelyn’s skin color was now a perfect
rosy pink, indicating that Madelyn’s jaundice was resolving, I had
noticed the slightest yellow tint in the corners of the whites of her
eyes. I remembered her pediatrician stating that in addition to the
standard jaundice blood drawl and other newborn screening tests, she would add one more to assess Madelyn’s liver function. Being a new
mother and being naive, I did not think that there was anything
wrong with Madelyn. She seemed healthy and her pediatrician also felt
the yellow tint in Madelyn’s eyes was most likely related to newborn
jaundice.

At 8:00 am, the morning following Madelyn’s pediatrician visit, I
received a phone call, it was Madelyn’s pediatrician. Stoically and
calmly I remember her stating, “Amanda, the labs we drew reveled that something is wrong with Madelyn’s liver. You need to get her to Texas
Children’s Hospital now. The liver team is waiting for you.” I do not
remember much else after that call, but I remember frantically calling
loved ones and throwing clothes into a bag. I remember it was storming
and raining and the streets were flooding as we frantically drove to
the medical center. It was as if everything was falling apart. I
remember looking at my sweet girl in her car seat. She was so tiny,
dressed in her ballerina jumpsuit. She was so calm, so brave.

After a week of brutal diagnostic testing, Madelyn was diagnosed
with Biliary Atresia. Biliary Atresia (BA) is, ” a serious liver disorder
that occurs before or shortly after birth when a baby’s bile ducts
(the tubes that carry bile from the liver) become blocked. The body
needs bile to aid digestion and carry wastes from the liver out of the
body. When blocked ducts prevent bile from being excreted, the liver
becomes damaged, resulting in liver failure.” Biliary Atresia is
extremely rare, not genetic, and is silent in that it is not detected
during pregnancy.

I will always remember the face of her liver doctor, walking into our
room, tears in her eyes, as she told us that in order for Madelyn to
live, she would need a liver transplant. However, at the time, Madelyn
was too little for a transplant. In order to “buy time” for Madelyn to
grow and become strong enough for a liver transplant, she would need a
specialized surgery called the Kasai, in order to attempt to
temporarily decrease the stress and damage being placed on Madelyn’s liver. Surgery was scheduled for the following day.

On Madelyn’s one month birthday, my tiny warrior was carried into the
operating room to undergo one of the many medical procedures aimed at
saving her life. After a grueling morning and afternoon in the
surgical waiting room, we were able to see our tiny warrior, she had made it through the surgery with flying colors.

Following Madelyn’s initial diagnosis of Biliary Atresia, the
complications associated with her disease frequently reeled its ugly
head. We found ourselves frequently at Texas Children’s Hospital.
Madelyn’s liver disease was progressing quickly and so her liver team
worked frantically to provide the tools that Madelyn needed to help
her grow for transplant. At one point, Madelyn was connected to a feeding tube 24 hours a day, 7 days a week. This tiny child who
had a feeding tube in her nose, a PICC line in her heart, never
stopped smiling. She never stopped seeing the world with so much joy
and enthusiasm. She rarely fussed, she rarely cried. She was named, “Miss Happy” on the” liver floor “of TCH, because she was always truly
happy, truly joyful, no matter the circumstance. For 8 months, Madelyn battled liver failure and all of the horrible complications that are associated with the disease. So on December 15th, 2013, when we received “the call” that there was a liver for Madelyn, I felt as though it was Christmas Day. Finally, my baby, would feel good, finally she would be free of all the tubes, the machines, the pain. She would be able to finally live! 

We rushed to the hospital with high spirits, with high hopes! It was truly a gift. 
In the early hours of December 16th, I held my sweet baby in the surgical waiting room, waiting as her surgical nurses finalized last minute details for her transplant. She sat in my lap, playing with a granola bar wrapper in her hand. She twirled it around in the air, placed it in my face. Smiled. When it was time for her to go to the OR, her nurses carefully scooped her from my arms, reassured me they would watch over my baby girl. I kissed her, told her I loved her. She waved “bye-bye”.  I felt relief, relief that finally Madelyn would have a chance at life, finally no longer have to suffer, and finally be able to live the life she so deserved.

Madelyn’s surgery went beautifully. There were no complications. However, as the hours and days after transplant progressed, it became apparent that something was wrong with Madelyn’s new liver. Surgeons summarized that Madelyn’s body was rejecting the new liver and she was quickly going into rejection and needed to be “re-listed”. There were several opportunities for new livers which the doctors explored, and unfortunately those offers were not the right match for Madelyn. At one point they allowed myself to be assessed to be Madelyn’s live donor, which at the time live donors were not a great option due to high complications. I was unfortunately not a match. 

She was quickly  deteriorating and one by one each of her organ systems were also failing as well. It was around this time, that doctors made the decision to pull Madelyn from the transplant list, as she had developed sepsis and would not be able to survive a transplant. Devasted does not even describe my emotional state that day. I felt as though my heart had been ripped from my chest.

On December 25th, Christmas morning, Madelyn “coded.” Doctors performed extraordinary measures on her that day, determined that she would not pass on Christmas Day. On December 26th, after days of “yelling” at God, I remember I was washed over with an overwhelming peace. This perfect peace. It was as though I knew that the miracle I wanted, the miracle that Madelyn would survive and wake up and be on this earth with me was not the miracle intended for Madelyn. The miracle that I had been desperately seeking was for Madelyn to be ultimately healed. Healed in Heaven. Truly healed. At this point, Madelyn was in full organ failure and had suffered significant brain damage. IF she survived, her quality of life would have been poor. We made the difficult decision that day to let her go, to set her free.

December 26th, 2013 was the worst day of my life. Nurses carefully placed my sweet baby, in my arms. I gazed at her sweet face as tubes and lines were carefully removed from her battered body. I stroked her strawberry blonde hair which had started to develop curls. I begged God to show me He was truly there, to send me some sign. You see Madelyn had experienced significant brain damage and most likely had suffered some paralysis, which was evident as she lost movement in her face. However, as she took her last breath, my Madelyn gave us the most beautiful, peaceful smile and then she flew into Jesus’s arms. I can only imagine it was at that moment He scooped her up and he took her to Heaven.

Madelyn was one of the bravest people I have ever met. My co-workers had even stated that Katy Perry’s song “Roar” was written about Madelyn, because she was such a fighter. She endured more pain than any child, than any person should ever endure. Yet, this child smiled through it all. She was happy. She truly illuminated joy to all those she met. Though her life was incredibly short and her world incredibly small, Madelyn and I made so many memories. Whether it was going on a walk on beautiful sunny day, watching the tropical fish in many of TCH’s fish tanks, to singing and dancing around a room, our world was full of so many happy memories, which I am so thankful for.

It will be 6 years, this December since I was able to hold my baby girl. Losing a child is a journey. It truly is. As I have walked this path, I have met incredible nurses, doctors, friends, mamas who have supported and loved on Madelyn while she was here on this Earth and then loved on me after she went to Heaven. I continue to grieve her deeply, but I have found beauty along the way. I am still so thankful to her liver donor. Although Madelyn’s transplant did not go as planned, I am still so thankful she was given the chance of transplant. Sadly, many children die waiting for organs.

In 2014, I had the chance encounter of seeing one of Madelyn’s liver doctors. He just happened to be in the area for his child’s soccer game. We hugged and he told me he had wanted to reach out to me to let me know that the hospital Madelyn had been born at was implementing screening for biliary atresia to every newborn baby born at their hospital. To test for BA, it is  just one extra blood test. I was so touched to know Madelyn had impacted this hospital in such a way, that her story could help other children as well. In 2015 and in 2017, Isaac and then Oliver, Madelyn’s two little brothers entered my world. I see parts of her in them. Isaac has her blue eyes and her sensitive heart, Oliver shares her joyful spirit. Though they are still young, they are learning about their big sister in Heaven, who watches over them and loves on them every day.

I still at times question God and my heart hurts a little bit more when I see a beautiful dress in the girls’ clothing section and wish I could snatch it up and dress Madelyn or when I see a little girl – as I yearn for my sweet daughter and for the color pink in my life as well. However, I cling to Jeremiah 29:11 “For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” This journey has not been easy, nor at times made sense or seemed fair, but I feel it has shaped me as the person and the mother I am today.

Madelyn taught me to never give up, to find joy in the small things, to find beauty in this world, to reach out to others in need. I miss her deeply but I am determined to live out her legacy. To make her proud. She is my hero.

Till the day we meet again, I love you forever and always Madelyn.

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Our Story of Hope- Robinson Family (Kylie Noel)

In May of 2014, our family of five celebrated our little girl, Kylie Noel’s, 4-month milestone with a healthy doctor check up, her first photo shoot, and a family getaway to Dallas to visit her uncle at college. Kylie was a wonderful sleeper, sleeping through the night at around two-weeks-old. She would nap just about anywhere. I even have a picture of her napping, wrapped up in her favorite blanket in the front of a store basket while shopping for our church women’s retreat. She was the first of our three babies to love sleeping on our chests – such a snuggle bug. The most laid back & outgoing baby girl full of hearty giggles. Kylie loved being held by anyone that wanted one-on-one time as she gave them her full captivation. She adored and was equally adored by her 5-year-old big sister, Peyton, and 6-year-old big brother, Jonah. Peyton and Jonah being so close in age, we hadn’t yet gotten to see them in such a care-taking, gentle, and adoring way like they were with Kylie. They just melted around their baby sister. 

This is the only family picture we have with Kylie; it was a random picture we took in a coffee shop late one night during a trip. Such a treasured picture!

On May 3, we spent the day like most Saturdays, cleaning up the house and running errands. We were also preparing to celebrate my husband, Dennis’, birthday with a party in our home the next day. Little did we know that normal, mundane, routine day was filled with all of our beautiful little Kylie girl’s “last everything.” We had a marital squabble first thing. Such a waste of precious time. Kylie kept smiling and coo-ing at us and we quickly got over it and resumed our day’s plans. 

That evening, we had our nephew over for a sleepover and popped some pizzas in the oven. I had decided to run a few last minute errands during Kylie’s last nap. As I prepared to head out, I got a bottle ready for her daddy to feed her and lay her down. She kept coo-ing & smiling at me, as though to tell me to stop and spend a few minutes with her. So, I put my purse down and stayed to feed her before running my errands. That’s the moment I play over and over again in my head. So thankful I stopped and fed her that last bottle as we cuddled and looked into each other’s eyes that last time. I can still remember the fullness of her body in my arms. At times, I can still feel the weight of her body against my chest and the warmth of her head in the crook of my neck as I burped her one last time. I kissed her chubby cheeks, handed her to her daddy and left for the store. 

That was it. Those were my last precious moments with my baby girl. The next moment I would look upon her would be the most traumatic moment of my life. 

Around 9pm, I returned home and was enjoying a chat with my husband. I got a bottle ready while Dennis went to wake her. Our entire lives and perspectives changed those next few moments. Kylie wasn’t breathing. Dennis yelled for me to call 911. He began CPR and continued until the first responders arrived and let him know he could stop. She was gone. She had passed away shortly after falling asleep. The rest of that night was a blur. Our front yard was covered with officers, emergency personnel, fire trucks, ambulances, crime scene investigators, and a constant coming and going of neighbors, friends and family; everyone in shock and no one being able to help our little girl or change our reality. We weren’t allowed back into our home until it had been thoroughly investigated. So, we sat outside in the midst of our sudden grief. But in that deep, dark-pit moment, we caught a glimpse of peace and hope – God, our Faithful Father, showed up. The full moon shone on the Easter cross still in our front flowerbed and illuminated the words written on it, “He is Risen!” We felt God comforting us in a way only He can. Because His Son, Jesus, defeated death and is alive and well, our daughter was alive and well and in His presence! We WOULD see her and hold her again! This was NOT the end!

“Soon the world will no longer see me, but you will see me. Since I live, you also will live.”Jn 14:19

“Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord.” 2 Cor 5:8 

The following weeks consisted of the most unnatural moments and events any parent should never have to live through: not being able to pick up or move our own child until she and our home were cleared by the investigators, meeting at the funeral home to pick out a tiny casket, planning her memorial and burial, finding every picture we could of her, and choosing the last precious outfit from her closet she would wear here on earth. The coroner’s report arrived and we were told that they found no fault or reason to explain why she had passed and determined it to be SIDS. Through the shock and fog of that night, the Lord spoke clearly to our hearts that this tragedy would not be meaningless. (2 Cor 4:17) Her life has great purpose! Satan would not win in her life story! We vowed to share her story and the hope and peace our heavenly Father gave us; a hope and peace that TRULY surpasses all understanding, one moment at a time. 

By the grace of God, we welcomed our precious rainbow baby girl into our family about one year later. Piper Noel (named after her big sister in heaven) has been a miraculous gift of grace that has brought so much healing to each one of us in so many ways. 

Our family with Piper; our rainbow baby.

Our grief still comes in waves and many times unexpectedly but, those waves aren’t as rough or as often as they used to be. Although there are more days of joy than pain now, our hearts and arms will always ache for our little Kylie Noel and for our family to be complete again. So, with God’s strength, we choose daily to find joy in our HOPE through Jesus, to remember that this will not be forever and that we will be complete again one fine day in Glory! 

Each day, we are One Day Closer to Glory!

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Our Story of Hope- The Warner Family (Taylor)

On November 13th, 2010 our lives changed forever. After attending a gift gathering party for less fortunate children we were rear-ended at a traffic light. The driver’s seat collapsed onto our sweet 17 month old, Taylor Grace, causing severe head trauma. She was put in a helicopter and sent to the hospital where we spent hours asking “Why is this happening?” and “Why would we be punished for donating toys to a good cause?” We just sat by her bed praying for a miracle and that she would somehow wake up. Eventually we realized she had already left and we had to let go. On November 14th she went to be with Jesus. 

There were several questions that continued to run through our minds. I remember Taylor had been a bit of a surprise addition to our family. The two of us were going through some marital struggles and I wasn’t completely excited about adding another child into a less than ideal situation. However, it seemed she was sent to us to help fix our relationship. She was always the sweetest baby with a quiet disposition. She rarely cried, slept through the night almost immediately and was perfectly content playing with her toys while I got things done. Sometimes she’d be sitting in her infant seat patiently waiting for me to chase our oldest around. She never fussed at all. When I’d finally get back to her she’d grin as if to say “you remembered me Mommy” I don’t think anyone ever saw her without a smile on her face. I had nicknamed her our “angel baby” little did we know that’s exactly what she was.  After we lost her I remember asking repeatedly, “why did you send us an unexpected baby just to take her back?” It wasn’t until months later that I realized her presence had a profound impact on our relationship and her loss forced us to depend on one another to keep going. We definitely had our struggles but in the end she brought us closer together. 

The week and months after were a challenge. Our 4 year old son, Jack, struggled the most with the loss of his best friend and reliving the trauma of the accident itself. For several months he wouldn’t speak about her at all, only watched videos on my phone. He spent hours with our family priest and play therapists working through his PTSD. I remember one day he had a breakthrough and finally said out loud with tears running down his face, “they put her in the helicopter and I never got to tell her goodbye” We remember feeling terrible because we debated whether to take him into the PICU to see her. We decided we didn’t want his memories to include her bruised and unconscious, only playing and happy. A few days later he came downstairs and told me “Taylor came to me in my sleep and told me goodbye.” It seemed to heal his broken heart a little but to this day, he’s almost 12, he still struggles with the loss. We’re so thankful he survived that terrible accident but a piece of him died with his sister. We’ve had a constant battle with people who don’t understand how PTSD works in a child. We spent years trying to find him the perfect fit for school and social environments and he’s finally moving forward in a positive manner.

Almost exactly one year after the accident we were blessed with another baby boy, Rylan Taylor. We truly believe he was sent to us around the anniversary to give us time to process the grief of a year passing but also distract us from the pain. We had a Mass said in Taylor’s honor and the following week we had a beautiful addition sent to us from Heaven. He’s wise beyond his years, definitely an old soul, and people have said he must’ve gotten his own brain plus the smarts that Taylor passed onto him that she wouldn’t need anymore. He always knows when one of us needs a cuddle or a funny comment to cheer us up. He was definitely sent at the perfect time for our wounded family.

As Rylan was nearing his second birthday we found out we were expecting yet another baby boy. I’ll be honest when I say that I was a bit heartbroken at finishing out our family with 3 boys and an angel baby girl in Heaven. I wanted another little one to dress in pink and spoil rotten to fill the void that we had from Taylor. I really wanted that close mother-daughter relationship that my mom and I share. However, things would soon change for our family again. At my 20 wk ultrasound we discovered there was no longer a heartbeat in our precious Patrick James. Another tragic event led to more struggles for our family. I remember posting on Facebook that our sweet baby boy had gone to play with his big sister. There was some comfort in knowing he already had someone to take care of him but we were still angry that God would allow us more heartbreak. This time our priest was no longer available to help work through the grief. We had to depend on one another and our faith in God to see us through. We knew there was a reason we lost yet another precious gift but didn’t know what it was at the time. 

Just a few months later we received our answer. We were expecting again, this time a baby girl. It seems that God also had a plan for our family. He didn’t think we were emotionally ready to add pink back into the family. We were blessed with a beautiful baby girl, Finley Joy, in March of 2015. Finley is the exact opposite of Taylor in every way. She’s much more demanding and her physical features are completely different. It’s been amazing watching her grow these past 3 and a half years but there are definitely moments when we look at her and think of the things Taylor missed out on. We often wonder if Taylor would’ve been as obsessed with princesses, pink and all things girly.

We knew we wanted to do something to honor our sweet babies in Heaven but struggled with emotions of opening old wounds. After several years we decided to look into the dangers of Seat Back Failure on back seat passengers, the official cause of death for Taylor. We discovered it’s unfortunately very common and made it our mission to fight for change in government standards to prevent this from happening to another child. We’re still fighting today but have Hope that things will change in the near future. We’ve run several news stories and have many government officials fighting with us to require auto makers to fix their seats and lessen the chance for them to collapse on rear impact. 

We felt that fighting for change with Seat Back Failure was definitely an important mission but we were still looking for another way to honor our babies. That’s when we found Hope Family Care Ministries. Their mission to help other families who are drowning in grief at the loss of their child spoke to us. Our son has really struggled with the loss of both siblings and through Hope he’s starting to see things differently. He no longer feels “singled out” as the only person who has lost a sibling. Now that we were in a place we could discuss our pain with others we wanted to join forces with them and help others who are experiencing similar loss.

The Hope Kids Bags really touched our hearts because everything our son received after the accident is still nearby at all times. He cherishes the gifts he has in remembrance of Taylor and wanted to contribute to others in a similar way. There are nights when I’ll see him cuddling a stuffed animal or reading a book he received almost 8 years ago to connect him with his sister. Our younger children will never know their big sister but they also feel her presence every day. We created an art room in the basement for our middle child. It’s in the same space that we keep Taylor’s possessions and he finds comfort in going downstairs to color or paint and know his sister is with him. Our daughter still isn’t quite old enough to really understand but she knows she has a sister in Heaven and she gets to wear some of her clothes and play with some of her toys. It’s our way of connecting the two girls with one another. We never want our children to lose Hope in the face of grief and struggle so we do our best to keep them connected with the memory of their sister to the best of our abilities. We hope that by sharing our story we can help others find Hope in their own painful stories.

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Our Story of Hope- The Ford Family (Everly)

“You have been assigned this mountain to show others it can be moved.” – unknown

The morning of May 2nd started out different than usual in that I didn’t rush.  Everly woke before Major, my 3 ½ year old and I pulled her into bed to nurse.  As I laid there on my side feeding her from my body I took her all in.  I savored her.  I distinctly remember looking into her eyes as she nursed, stroked her hair and thanked God she was mine.  But she wasn’t mine.  Not entirely.  She was on loan and little did I know that loan was being cashed in later that afternoon.

I left for work that day not knowing it would be the last time I would hold my baby girl.  I nursed her before I left because she wouldn’t take a bottle and prayed I could get home to nurse her again without having to pump.  I was the Regional Manager of Georgia for lululemon athletica and my Area Director was flying in that day to visit my stores with me.  I was on a store visit when I noticed I had several missed calls from my husband Josh.  One of the workers came up to me and handed me the store phone.  It was Josh saying in a desperate, frantic voice for me to get home and that Everly wasn’t breathing.  I screamed as I dropped the phone and ran towards the door.  My boss grabbed my things and ran after me asking me what was wrong.  In between groans/screams I told her what he had told me and she drove me to the hospital.  My husband had called me back to tell me to go to the hospital and not to come home.  He would be on his way behind the ambulance.  What he really didn’t tell me was that the investigators were at our house and treating it like a crime scene.  He didn’t want me to have to deal with that.   (My husband is a federal agent and has been on the other side of situations like this.  He knew how to handle law enforcement and shielded me from that side of things)

I arrived at the hospital and someone was waiting for me.  She ushered me down a hallway and another until we passed the emergency entrance.  I saw a gurney and a paramedic standing there.  He wouldn’t look me in the eyes and I knew.  I knew my baby girl was gone.  I screamed, “He won’t look at me.” Over and over until I was hoarse.  The doctors and nurses who worked on her came into the tiny room they put me in conveniently positioned next to the psych ward to tell me the news.  I couldn’t believe it even though I already knew in my heart that what they were saying was true.  She was gone.  It felt like a bad dream.  I hadn’t pumped and my breasts were beyond full.  I was so angry that she wasn’t alive for me to nurse.  My whole body hurt, yearning for her.  My husband arrived shortly after the doctors told me and I howled in pain as we held one another, hot tears streaming down my face.  How in the world was my beautiful, perfect baby girl dead?

Everly was with my trusted nanny Cici the day she passed.  She put her down for her nap like any other day and Everly never woke up.  She passed peacefully in her sleep with no suffering.  She was face up and perfectly fine.  She didn’t suffocate or suffer.  Her autopsy months later came back perfect.  She had nothing wrong with her.  It was a tough blow to hear because it would almost be easier if there was something wrong.

No one can ever prepare you for something like this.  You hear of it happening and yet you never think it will happen to you.  I can honestly say I was one of those people who never in a million years thought that I would lose my child.  Everly was a gift from God.  Through all of this I have come to the realization that God doesn’t take our babies.  He received her that day but He didn’t take her.  I know she is with Him and that does give me some peace.  Grief is THE hardest thing I have ever been given the task of navigating and yet I knew almost immediately that God has a plan and a purpose in all of this suffering.  He will see us through this.  Everyone kept telling me that I can be “Mad” at God.  I have never once been mad at God.  I knew that God cried too that day.  God didn’t mean this to harm me.  The enemy did and I would NOT allow the enemy to win this one.

There’s a quote by a poet named Yung Pueblo that goes like this, “true love does not hurt, attachments do.” He goes on to say that Love cannot cause pain; attachments cause pain.  When the attachments that we create in our minds break, we feel their rupture deeply, how deeply depends on how much we identify with the image that we have created.  This resonated with me so deeply.  I had created the perfect image in my mind of my life with my daughter.  I’d bought clothes sizes ahead never once thinking she would never wear them.  I assumed.  I was confident she would.  I was wrong.  In reflecting on this, all I see when I open that closet is pride.  My pride for my beautiful daughter.  None of it matters.  Actually she hated all of the frilly smocked dresses and large bows I put on her head.  She couldn’t have cared one bit about any of it.  It was my own pride and wanting that bought all of it thinking I would have her here to dress her like a baby doll.  I can’t beat myself up for the images in my mind that never came to fruition or for the fancy clothes.  What I do know is that the images of what would be created more pain for me in thinking about what might have been.  So I choose to remember the love I gave her in the eight months she was here.  The really good happy times that did happen, not the ones that didn’t and never will.  To be present with my son and husband and give them a wife and mother they deserve.  I am still here.  There is still a purpose for my life and I must live it to the fullest.

Everly James Ford is a bright light in this dark world.  She set me on a path of deep spiritual awakening and has brought me closer to our Lord during this than I ever thought possible.  I am forever grateful to be her mother.  I will continue to heal through this and know that I will NEVER get over her loss but will get through it, day by day, minute by minute, second by second.  Each day is different and I take it as it comes.  I recently left my corporate job to pursue my career as a Full time artist.  Everly taught me to take risks and live big.  We are not guaranteed tomorrow and I am living life out loud for her.  My art helps heal me and others.  It is where I find peace in the storm of her loss.  Follow along via Instagram as I continue to post there about navigating the waves of grief.

www.jgfcollective.com

@jillgordonford.art- Instagram