Yesterday I was honored to participate in a fund raising walk for the Juvenile Diabetes Research Foundation. It was a beautiful day and there was a great turn out. There was moment at the beginning when they had live music and speakers and the chairwoman of the family teams spoke. At her side were several children from her team, one of which was her daughter who had been diagnosed with diabetes two years ago – at the age of three. I had one of those moments where you stop noticing the sound around you and all I was aware of was this precious girl who was grinning and mugging for the jumbotron. I was remembering my children at the age of three and trying to imagine what it would be like to try to explain what was happening to a toddler. If you go to youtube and put jdrf in the search box you will find multiple videos of kiddos and their stories. If you do go there be prepared to have your heart broken and changed. My story below is made up, and I have no statistics for you, but I know that diabetes is on the rise in the country. Every year it seems there are more and more students at school for whom the sticks, dietary restrictions, and insulin administration are a part of their daily routine. I have witnessed the other end of a life lived under the control of this disease. When Dale was on dialysis and I would sit with him sometimes at the center, and most of the patients undergoing treatment were diabetics. Some were obviously sick. some teased and joked and their spirits overflowed to those around them. Kidney failure, blindness, amputated feet, coronary problems, all related to the disease – all part of their experience. I got to know other spouses and caregivers. We shared worries, concerns, ideas for feeding our spouses.
Pray for a cure. Pray for the kids. Pray for their families.
He stared up into the night sky. If he could only see far enough, the entire cosmos, spread out beyond his imagination, which was formidable, maybe the answers would become clear. For now, all he could do was close his eyes to the tiny lights and shut out all the pain, as if he could or would. His little girl, one minute laughing and full of promise, infinite as those stars, now threatened and having to endure daily pain.
What would her future be? Would she have a future? Was it his fault? Why would God do this to her. He would gladly take it on if it meant she could go back to the life she had just yesterday. His wife was better at this than he was. She cried, but she did it alone in the shower, where Emma wouldn’t see. When she was with Emma, she held her sorrow in and worked every minute to make sure that we were checking her blood glucose levels, that we had the carbs counted and food servings figured out to make adjusting easy. Easy. That was a word that didn’t figure in their vocabulary anymore. Every activity that they did, any trip away from the house, meant being prepared for any eventuality that might present itself.
They had gone to a birthday party that day. Emma had her crackers, and they went to the car for her stick and to do her insulin injection. Later the kids were playing Farmer In The Dell and as the song came to a close, he thought. “The cheese stands alone.” Even in this group of happy children, maybe more so, His Emma was like the cheese. She looked like every other child on the outside. She ran and played and laughed. But under it all, on the inside, she WAS the cheese. She stood alone.
Emma cried at the sticks. Her little eyes would tear up and she would whimper. “No sticks daddy, no sticks!” but she held still and let them stick her anyway as though some part of her was resigned to them hurting her. That look of resignation hurt him more than any screaming she could have done. He drew in a breath and thought sternly “Enough! Suck it up! If she can do it, you can do it. ” He pushed himself off the lawn chair as his wife came out the back door. She too stared at the night sky. Her arm went around him and she laid her head on his shoulder. “Emma is asleep.” she said.
He looked down at her. “Can we do this?” he asked.
She looked up at him and he could read the answer in her eyes. There was no choice. She was our Emma. Insulin is not a cure, but it keeps her alive. We would do whatever it takes until a cure is found.