The Butterfly Chronicles: Chapter 7 "The Best Years"
Updated: Dec 10, 2021
The summer of 2015 was both exciting and nerve-wracking. It was great to see Hannah get stronger. It was even more thrilling to see Hannah start eating as much as she wanted for the first time in her life. One thing that was accomplished during her nearly 3-month time in ICU was that Hannah could eat just about anything she wanted. Up to this point, she lived almost solely on parental feeds and TPN and was only able to nibble at real food. Don’t get me wrong, she knew the taste of food. She was already an excellent cook. Her culinary skills really began to soar now that Hannah was able to eat what she wanted.
Hannah also got back to playing her music. At this point, we had an RV, which we took to the Clifftop music festival in August. Hannah had Clifftop marked on her calendar all year. This ten-day event was one of the highlights of her life for seven years. She insisted on getting back on stage that summer, even though she wasn't at peak performance level yet.
The nerve-wracking part of this segment of the story was with Hannah’s congestive heart failure. We had been told that if it did not improve within the first two to three months of her diagnosis, that it would not ever go away. We were also told that if it became worse, then it would continue to worsen and eventually take her life. We had EKGs done every month. She was on heart medication. Things were not improving. By fall, it was not looking good. It just didn’t seem right that God would allow her and us to go through all of this just to lose her to a heart condition a few months later. I remember the EKG in mid fall showed Hannah’s ejection fraction to be as low as 20%. This was very concerning from a medical perspective. Normal range is closer to 65%. Anything around or below 20% has a high mortality rate. As always, we prayed and updated Hannah’s prayer warriors.
We went back to the pediatric cardiologist in November and Hannah’s ejection fraction was normal! This was another miracle. It turned around so quickly just after it had hit such a low point. She was weened off her heart medication over the next few weeks. We went back in late December or early January for another appointment and her ejection fraction was better than average! We were elated. We could finally relax a bit and try to enjoy a more normal life.
Of course, we still had daily challenges. Hannah remained on TPN almost every day. She also had to have supplemental IV fluids because of her extremely short bowel. But she was no longer on heart meds and the shadow of death that hung over her for much of that year shifted out of sight.
The next three years were by far Hannah’s best. She really took off musically, socially, and in other ways. Hannah was an old soul before she was even ten years old, but at times she actually had a life that resembled a normal teenage girl. She would still be homeschooled, but she made many friends. Most of them were older than her, but that didn’t matter. Kids her age just couldn’t relate to her issues.
Hannah also got a job at the music school where I was director. She was teaching violin lessons to adults and children alike. She also catered desserts and meals for people in the area. We did quite a number of music gigs for weddings, funerals, festivals, and other events. Her mother and I were proud parents.
Still, Hannah’s medical issues did not go away. We had labs every week or two. Her electrolytes would swing up and down. Sometimes her WBC count would get low and Hannah would catch viruses and infections. She had far too many rounds of antibiotics during this time, but we had no choice.
Looking back, I realize that the time we had after Columbus until her last year was a gift from God. I remember reading in a medical journal that children that are born with CIPO have close to a 90% mortality rate by the age of 5. Even fewer survived any of their teenage years. How Hannah survived her lengthy ICU stay, her life-threatening blood clot, and her congestive heart failure was nothing less than incredible. More than one physician used the term “miraculous” to describe her recovery. Hannah had just turned 14 and wasn’t finished with her life on earth just yet.
Throughout the next 4 years, we had many ups and downs. Overall, these were her best years. While we continued to manage many daily medical issues, Hannah began to thrive. “Thriving” is a medical term that Hannah could never claim. As an infant she was labeled with “failure to thrive.” We hated that designation, but it was true. It was heart-wrenching; yet, it was accurate in her case. However, from ages 14 to 17, Hannah thrived in many other ways.
Hannah’s thriving years created the most precious memories for those of us who knew and loved her. Hannah won ribbons in music competitions. During this time, she made her most meaningful friends outside of her family. She earned money and was productive. Hannah’s culinary genius was on full display. We had three amazing vacation trips to Hilton Head, among other memorable trips. Hannah grew spiritually during this time. The only really low point, was when my mother became suddenly ill with stage 4 uterine cancer and died within three months of her diagnosis.
Hannah was so close to my mother that in some ways, she never recovered emotionally. She grieved hard. My mom seemed to understand Hannah more than anyone else in our extended family. I remember when Hannah was about 4 or 5 and tried to eat a small piece of her birthday cake and threw it back up. My mom just wrapped her arms around Hannah, clutched her tightly and just wept hard for her. My eyes welled up with moisture as I stood there helplessly and watched this scene.
My mother had always been healthy, but she just had this spiritual and intuitive way about her that touched Hannah. My mom also faced her own battle, albeit a short one, with faith and grace. Hannah was there by her side changing my mom’s dressings, massaging her, and just finding ways to love on her. When my mom was transferred to Hospice, her spirit was strong. My sister, who rode with my mom on the way to Hospice, told us that my mom expressed that she was excited. My sister asked if she was excited for Hospice and my mom corrected her and said, “I am excited to see Jesus!” That's just the kind of person that my mother was. Hannah didn't miss any of this.
Hannah and I stayed the night with her that first night at Hospice. We played some songs for her on guitar and violin. My mother was very complimentary of the music. Then she became a bit agitated and wanted to get out of her bed. The nurse gave her some medicine and she fell asleep. She wouldn’t fully awake again until she woke up in Heaven.
There were so many layers to the impact that this experience had on Hannah. Perhaps the most significant impact was that she demonstrated the right way for Hannah to face her own mortality—something no teen should have to face. Still, I cherish these years with Hannah. I might even be tempted to call them "bonus years" if it weren't for the fact that I believe in the sovereignty of God.