From the time our daughter, Jody, was diagnosed at nearly the age of two until her last breath, I knew that the future of our family would be devastating, incomprehensible and uncertain. We were fortunate to live near the University of Iowa Hospitals and Clinics in Iowa City, Iowa. The department head of Pediatric Neurology had a sterling reputation, sent blood samples from Jody, her dad and me to the biochemist who had diagnosed other individuals with Leukodystrophy. There was no second opinion. He WAS the second opinion. God, please help us.
With an accurate diagnosis of Krabbe Disease, the information we were given taught us that this was a degenerative brain disease, affecting the white matter of the brain. There was NO CURE. Typically, children do not live a year past diagnosis. We said our goodbyes many, many times. When she was three years old, it seemed clear that she would not survive another week. Funeral arrangements were made, the first of three times. I remained in a prayerful, yet in a fight or flight state of mind. Jody’s dad and I took turns anticipating her cares throughout each night, taking one-to-four-hour shifts. The interrupted sleep affected our functioning at work, eating habits and concentration, to name a few.
Enter in-home, skilled care for Jody. We were adamant that Jody continued to live at home. She was eligible for eight hours per week of RN and LPN care. Eventually, it was increased to 24-hour care. A few nurses continued to care for Jody for eighteen and eleven years. We considered hospice care. That was in place three separate times. I leaned on God’s direction. Our family grew. We made the decision to have two more children. Jody’s brothers, Joseph and Sam, who were not affected with Krabbe Disease, lived their entire lives with no privacy, being parented by two stressed parents. They had a sister that had a serious illness she wouldn’t survive. These siblings played, sang, loved and developed tight, inclusive relationships. Joe and Sam have grown into genuine, courageous, compassionate and humorous men with the most extraordinary coping skills… More than most people I know, myself included.
In younger years, Jody developed many friendships through her day program, attended public Jr. High School, earned a High School diploma and socialized at Employed Systems. She had her own responsible and encouraging associates in each program. There were opportunities for school dances, modified bowling, and even a road trip to Camp Courageous with her classmates for a weekend. This moth-er/daughter time seemed to be one of the most memorable times of our lives! Jody wasn’t able to walk, talk, eat or move, but she never lost her ability to smile and laugh. And that’s just what she did while she zip lined, loved the animals, as both of us canoed, went for strolls, made candles and danced to music. Arrangements were made ahead of time for a hospital bed with an egg crate mattress, specialized formula, a feeding pump, cotton linens, abundant sizes and shapes of pillows and pads, as well as pages of detailed care instructions, documentation and medications. I felt immense gratitude for this time, while Jody’s face told me she was truly happy. Her blue eyes twinkled. Shiny, chestnut hair framed her face. Ruby lips formed a deliberate smile and her beaming, fair skin looked like porcelain.
Eventually, the illness attacked Jody’s body enough to diminish vital organ functions. Angel Jody lived to be twenty-six years old. Even though her death occurred nearly ten years ago, writing about the days leading up to this, finalizing arrangements and the memorial service produces incredible sadness and deep anguish.
To this day, I pray for stamina, strength and peace of mind. Having something to look forward to and having fun are of utmost importance to me. I now use the words HOPE, OPTIMISM and ACCEPTANCE.
~ Sue Paulsen
Mother of Jody Lynn Vance (2/2/85 – 4/25/11)
I believe, without hesitation, in the power of prayer. As a child, I watched my mother pray silently. This role modeling affected my entire life by allowing me to talk to God about anything. I was convinced that He listened to my need for comfort, want for emotional stability, cries of desperation, which included tremendous anger, helplessness and hopelessness. Parallel to those, I experienced on-going gratitude for the blessings I had been given and felt merciful towards others.
With Sam’s permission, I would like to share one of the prayers he said immediately following Jody’s passing. He was eighteen years old at the time.
Sam prayed, “Lord, this is something new for Jody. Please take extra good care of her, just like You do with all of Your other children. And please help us keep our family intact.”
Joseph was working in California, while in the USAF. I prayed for him and safe travels to Iowa. He wrote a sincere expression of love for his sister, that was spoken at the memorial service.
“Be still, and know that I am God.”
This scripture praises Him for being a source of power and salvation in times of trouble. The meaning to “Be still” can be to stop striving, stop fighting and relax. A deeper meaning can also be to stop worrying, stop trying to control things, to wait and find contentment.
My hope is that you will consider God’s words of direction, power and deep love for you. Imagine, gather scriptures and create a peaceful, quiet moment for yourself.
Be still, and know that I am God.