Katie & Ellie Clark's Story

by Katie Clark
Grandville, Mich.

"She's just like her mother." For most, that is music to the ears. But for me, it was far from it. In fact, it was the one thing I never wanted to hear about my child.

But my worst nightmare became a reality on August 30, 2004 at exactly 4:45pm.  That's the moment our pediatrician said what had always been unthinkable to me about my four-year-old daughter: "There is glucose in her urine." Other parents might wonder what that meant. But I knew. I knew too well. I knew in that instant the doctor's words meant our oldest daughter had Type 1 diabetes. Just like me.

While I sat in a fog, and our two daughters played on the floor, my husband, unfailingly supportive of my own struggle with diabetes since being diagnosed at age two, absorbed our pediatrician's words with great pain. For me, it was a nagging fear that came true. For my husband, it was another chance to be our rock, our caretaker and our lifeline. For my mother, it was a new heartbreak to add to the one when I, her own daughter, was diagnosed years ago. While Ellie played innocently on the floor with her younger sister, my husband and I tried to get our heads around it:  Our oldest daughter was now indeed "just like her mother." 

And while the reaction of most was, "Ah, but you are used to all this," for me, knowing what Type 1 diabetes meant only made my daughter’s diagnosis so much worse. Yes, I knew how to give injections and test blood glucose levels, but I also knew the dark cloud that would hang over what should be her happiest moments in life. After all, here it was, hanging over me. Again.

After one night in the hospital, we were sent home. It was nearly impossible to get out of bed the next day, but it had to be done.  After all, we had prescriptions for syringes, lancets, test strips, glucagon and insulin to fill – all with Ellie's name on them.  We now had daycare, teachers, and bus drivers to train. Each of them had to learn that Ellie could go from happy to life-threatened in an instant and to watch for the symptoms – even though we didn't know what those symptoms would be yet.

Life goes on – we had two young daughters to raise. With all of my heart, I wanted for life to just be "normal" for Ellie, but I'd lived the life she was facing. I know about the troubling teen years, when all hope seemed lost for me and I stopped giving insulin, nearly killing myself. I think about the insulin reaction on my wedding day that left me taking my marriage vows with orange juice stains on my veil. I remember my newborns being whisked away and a tube being thrust into their stomachs because their bodies were used to producing too much insulin. I have been wondering since age seven after reading about "complications" in a magazine when the ball is going to drop and the complications of living with Type 1 diabetes are going to invade our lives.  It's been over 30 years for me ... time is not on my side. I can't stand knowing Ellie will grow up with these same thoughts and experiences.

The day-to-day grind of living with Type 1 diabetes is almost unbearable, and it is definitely tiring and depressing. We are tied to our cell phones so we can be reached if there is an emergency or a question about carbohydrate counts or insulin doses. There are four visits per year to the pediatric endocrinologist office so Ellie's basal, bolus and sensitivity rates can be adjusted. There are four appointments per year for my adult endocrinologist appointments. In just a few months, Ellie will start a yearly trip to an eye specialist to make sure her eyes stay healthy, just like I have done since childhood. There are continual calls to the insurance carrier to fight for coverage of supplies. It is endless, and sometimes overwhelming, but there is no other way. It must be done. We have no choice. She's just like her mother.

There is hope. Some days the only thing getting us through is hope. Type 1 diabetes is one of the diseases scientists believe they can cure – and great hope lies in finding that cure in the breakthroughs of embryonic stem cell research. We have some of the best researchers right here in Michigan just waiting for the chance to do their work more effectively.

I know it may be difficult to think about using embryos for research, but fertility clinics throw away leftover embryos every day when they could instead be used to find treatments and cures. I really need each person to look into their hearts and think about what they would want, wish and hope for when they are holding their four-year-old down while they are kicking and screaming so they can give them a shot to keep them alive. Look me in the eye, and tell me to my face that you would not want all doorways to a potential cure to be open if you were living in my shoes. Embryonic stem cell research may possibly hold the key for a cure for my sweet little girl with the blond curls. How can we not pursue that? Let her life be clear and not rainy. Let her wedding day be without crisis. Let her rejoice when some day she hears the words, "She's just like her mother," because for her, with a cure, it can have wonderful meaning.