By Catina Byrum
Faith. Hope. Love. These may be common words that most of us see everyday, and we know what they mean, but as my family’s journey unfolds, these words have taken on a deeper meaning for me.
On February 21, 1996, my husband Jimmy and I were so excited when we first saw our son Luke for the first time. An uneventful pregnancy with happy outcomes soon changed to a fearful birth in just a few short hours. Luke had complications at birth and hours later was diagnosed with a complex heart condition. During Luke’s first year, we were seen by cardiologists every 2-4 weeks. Luke’s heart defect was very complex, and I was still learning the magnitude of his heart disease. Basically, we were in survival mode and taking one day at a time.
One particular afternoon, I received a call from the cardiologist. He called to discuss the options for Luke’s surgery. They had sent his heart studies to other hospitals in the country that specialized in his rare defect. One suggestion was a possible heart/lung transplant. I distinctly remember at that moment my world began to spin. In tears, I called my granddaddy, and he gave me the best words that helped me through the nineteen years we had him. He said “Catina, I know he is your child, but he is God’s child first. You have to remember that whatever happens, God has a purpose and a plan. He is always in God’s hands. You have to have faith that he knows best.”
From then on, I took a deep breath and tried not to worry (as much as mother with a child with a chronic illness can), but I knew the big things were things I just had to have faith in and to embrace each day with Luke that we were given.
Over the next two years, we went through heart surgeries as well as a diagnosis that Luke also had cerebral palsy with developmental delays. Talk about children needing an instruction manual. Through all this, however, we remained hopeful and faithful. We had so much love for this miracle child and we knew God had a plan, and we were entrusted with this precious, strong-willed little boy for a reason.
During years in college, before Luke was born, I studied to become an art teacher, but there was a voice inside that urged me to double major in special education. Luke also became my teacher. My experiences as a parent of a special needs child would prepare me for my career as an early childhood special education teacher that no college course could. God was preparing me for a huge purpose that I would not fully understand until years later when I began teaching in 2004. I had a love and understanding for these children and their families and could share my experiences with parents who were just beginning their journey with their special needs child.
For each of his nineteen years, Luke scooted around in his walker, went through many heart surgeries, and with so little words, inspired me, my husband Jimmy, and his younger sister, Faith. (We named our daughter Faith because there was a chance that we would have another child with a heart defect, and we had to have faith that she would be okay.)
Luke fought the odds daily, whether it was the numerous heart procedures or dealing with his physical, intellectual and communication challenges. He was our hero. In fact, on many occasions, when writing about a person she admired, Faith would often write about her big brother, Luke. She wasn’t the only one though. In our small community we couldn’t go anywhere without someone talking to him. Quite honestly, to know Luke was to love him.
In June 2015, our family and friends and teachers were so excited when he graduated high school. Luke had reached another milestone, and then just days later, our world crashed around us. Luke had a heart infection and suffered many complications, and just two weeks after his high school graduation, Luke graduated to heaven. The healing we prayed for was not what we hoped for, but God’s perfect will healed him completely.
At Luke’s service, our family was humbled by the enormous turnout and support. In our son’s nineteen years, he had impacted a community with his strength, courage and humor and love for everyone. There were people of all ages, abilities, races and walks of life. Students, teachers, doctors, church members, even the local grocery store people came. Everyone had a Luke story. We knew that although Luke’s time on earth was short, his life was well lived and although his physical presence is no longer, he lives within our hearts always.
Luke’s 20th birthday was last month. We decided we would celebrate it spreading joy like he did to others, so we brought gifts to the Ronald McDonald house and to the Child Life Department at the children’s hospital to help other families that were currently going through the same situation with their children as we did in the early years with Luke. Friends and family helped us also by giving us moral support, and additional gifts to take with us. What was anticipated as a difficult day was made easier by helping others. That Sunday was unseasonably warm and beautiful, and as we were walking in the sunshine to the hospital, I could almost feel him smiling down on us that day.
It has been nine months since Luke passed away. I am still on the first steps of the journey. This journey through grief I have found has its ups and downs. Its path is varied, and its landscape is unique, but I have found those that are on this journey often go to the same places.
When on this journey, I felt lost and lonely, I fortunately had faith, family and friends to help me find the way through and show me that they are there to help me with a hug, a word of support, and a listening ear. My faith in God’s plan continues to sustain me when his physical absence overwhelms me or daily life challenges stack up.
The journey can be difficult, but I have hope. There are days when the tears just well up in my eyes when I remember the sound of his voice when he would say my name repeatedly or when his beautiful blue eyes would gleam when he was being extra mischievous. I believe in God’s promise of everlasting life, and I know that one day I will see my Luke again in heaven, with a heart fully healed, and I cannot wait until the moment when he will walk to me, and I can hold him in my arms once again.
The journey seems long. Sometimes, I have to take each hour or day at a time. My steps may be slow and sometimes I fall, but I know that I must not stay down. I would not honor my love for Luke. He loved life and would still want me to be happy, and I need to love and take care of my husband and my daughter Faith.
As a teacher of children with special needs, I also see a little of Luke in each child I teach. He taught me how to love so perfectly, patiently and individually that I embrace each moment with my students and their families and hope that my journey with Luke will continue in the lives that I touch daily.
Catina Byrum is a Christian, a mother of two, Luke (in heaven) and Faith. She has been married for 23 years to her husband Jimmy. She is a special needs preschool teacher in North Carolina and enjoys painting and drawing.