The Legacy of Halle Grace
Updated: Mar 25, 2021
I was hesitant to share this picture with our first blog entry for the Halle Grace Foundation. This was the last family picture we took before Halle passed away. This one photo signifies one of the most difficult days in my life, yet it was a day of blessings as well. On this particular Tuesday, Halle had been in hospice for just over a week, her pain was so outrageous, that the pain medication was making her disoriented and she was quickly slipping away. Our two younger children, Ben and Neeley had gone bowling with Grammy that afternoon and John and I were home alone with Halle. We sat on either side of her and talked with her, comforted her and gently began to say our goodbyes.
It was then that she slowly lifted each of her hands, cupping them on our faces. She looked me in the eyes and said “I love you Mommy. I will always love you.” She then painfully turned to look John in the eyes and said to him, “I love you Daddy. I need you guys to bring Neeley and Ben in.” I told her they were out with Grammy and would be back later. She was adamant, “I need Neeley and Ben here NOW!” It took all her energy to emphasize this. “Why now Halle?” I asked. “Because I need to tell them I am dying and I need to tell them I love them both very much. Please bring them to me.”
We made a difficult call to my mom and asked her to bring the kids home. As they drove home, my mom was honest with them on why Halle needed them home. Neeley screamed, “already – I thought she had more time! Why so soon?” They both cried and held hands in the back seat. Grammy offered to pull over and give them comfort but they refused. They needed to be with Halle. Within minutes our little family of five were all together in Halle’s bed. Halle gently hugged her little sister and little brother and said those sweet yet sad words. “It’s almost time for me to go to heaven. I love you Neeley. I love you Ben. I am going to miss you. Please don’t forget me. I will never forget you.” And we all cried and held each other as tightly as possible. My mom took this last picture of us as a family. It’s a bit grainy but it is filled with love – a love that will never die.
In the days that followed, Halle’s body continued to shut down and she soon slipped away. We only had a few days with her after that picture was taken. Halle said her final goodbyes to those that were closest to her. She gave us a gift those last couple weeks in hospice. She shared her love for us and gave us her final wishes. Halle’s biggest fear was that she would be forgotten and that we would no longer say her name. She worried we would no longer talk to her or about her. I promised my sweet Halle Grace that she had nothing to fear – we would keep her name alive.
Prior to hospice, Halle faced each day in her life with a smile and brave face yet kept her pain and struggles real with those that knew her best. She demanded she had an active role in her medical care and as she got older she insisted we tell her everything happening to her body and allowed her to make decisions along with us and the doctors in her treatment. She remained brave until the end and always put others before herself. She was known to comfort her own doctors as they worked to figure out how to better her quality of life.
One story that comes to mind as I think of Halle’s character was shared to me by Halle’s gastroenterologist, Dr. Michelle Winesett. Dr. Winesett had been Halle’s GI doctor since Halle was just two months old. One medical condition Halle faced since birth was severe GI issues, which required frequent upper endoscopies on a yearly basis. We always brought Halle in with her special stuffed animal and one of her favorite quilts that she loved to snuggle with. Halle and her doctor had a ritual each time Halle went into the O.R. As the anesthesiologist gave Halle her sleepy meds (versed), Dr. Winesett would hold Halle's hand and tell her everything would be okay and she would be back with mom soon. After Halle would go to sleep, Dr. Winesett would then roll down her quilt and put aside her stuffed animal so they remained clean during the procedure. A year before Halle passed, her GI tract began to shut down (it was one of the first signs that her body was giving out for good). She was back in the hospital and again under Dr. Winesett’s care. As she went in for another endoscopy, that faithful doctor was by Halle’s side holding her hand yet again. Dr. Winesett was struggling to comfort Halle this time – I think she too knew there was little more she could offer Halle but she knew she didn’t want to give up on her yet. As she was about to say a few words to Halle, Halle began to stroke Dr. Winesett’s hand and said “it’s okay, everything is going to be alright.” Here my girl was, just 14 at the time. Her health had been deteriorating since she was 11, but it was now at 14 that Halle knew (before many us) that her body was beginning to shut down and there wasn’t much more any of us could do. And in that operating room, Halle saw the pain in her doctor’s eyes as the doctor was trying to find a way to ease Halle’s pain and give her a better quality of life. Halle was the one who reached up this time and held Dr. Winesett’s hand and told her everything would be okay. Halle had empathy for others - wondering how others were doing rather than being concerned for herself. That sweet concern for others is just one reason I am proud to be Halle's mom.
Many of you have asked how we are doing since Halle’s passing. We are all coping differently. Neeley has turned to music to grieve. She wrote a song for Halle those days in hospice and then sang it for her at the funeral. When she is at her saddest, Neeley listens to music, writes music or sings until her heart is comforted. Ben on the other hand, has become a ferocious reader. He reads for hours at a time some days. Halle would do this too – it was an escape for her. She could leave her bed and enter another reality. I think Ben finds his comfort in escaping this way too – it seems to be a way he can connect with his oldest sister.
John finds his way through the heaviness of grief with family. He has taken more time off work these past few months to spend with me and the kids. He takes Neeley to soccer games and shoots hoops with Ben. We watch movies together and face off in a good game of chess. He needs to just be with us as we all grapple with Halle’s loss. He finds comfort in togetherness.
As for me, I have found some sort of peace and comfort from keeping my promise to Halle. I promised I would keep her name alive. I promised I would continue her legacy of empathy, courage and love. I am keeping that promise by starting the Halle Grace Foundation. Halle knew the conditions her body struggled with were rare and she was open and willing to share what she had gone through with others.
Any time we were at a teaching hospital, Halle would welcome all the medical students and residents in her room with a smile. She would allow them to discuss her case and giggle as they made their recommendations for treatment. She giggled because she knew more than they did about her diagnosis. After they would present her case, she would then add, “well that is a good idea, but if you give me more pain medications, it could upset my GI system and then I could have more pain. Let’s think of something else.” She engaged them is the discussions and insisted on being a part of the treatment plan. She wanted to be a teacher and I hope this Foundation will continue that part of her legacy by teaching those new to the medical profession about the human side of medicine. How to keep the child a part of the process and keep things fun through all those medical struggles - as Halle once said, “if I need these needles to stay alive, we need to find a way to have fun while doing it. After all, I am still a kid.” In all she faced, Halle just wanted to live as "normal" a life as possible, but she was far from normal. Rather, she was extraordinary. She led her life with passion, bravery, love, and honesty. Her spirit inspired many and she continues to inspire us.
It is that spirit that I promised to keep alive. She gave so much to this world in the 15 years she walked on this Earth. She taught us empathy, compassion, joy, courage, friendship and most of all love. I am keeping my promise to Halle alive by starting The Halle Grace Foundation. You will not be forgotten!