Julian was diagnosed in August, 1997, at the age of 6. Within weeks he was giving his own blood sugar tests and in a few months, his own injections. He has been very active with Diabetes education. His family says that almost everything they've learned about Diabetes they have gotten from the Chidren With Diabetes website. He was featured in the state-wide newspaper, the Oregonian, in May 1998 as part of the feature, "My Family." The article explains how his extended families (his parents are divorced) deal and communicate with each other about his care. This story is now a standard part of Northwest Kaiser Permanente's new Diabetes patient information packets. In November 1998, Julian, along with three other children with Type I Diabetes, was chosen to be tracked by the Oregonian as to how well their schools are handling care for students with Diabetes. He and his family are pursuing the right of children in public schools to test their own blood sugar in their classrooms.
He spoke to and answered questions for a group of children with the K.I.D.S. program (knowledge, information, diabetes, schools). He has become part of the local JDF family, attending and promoting functions. Last year he raised, by all his own solicitations, almost $900 for the "Walk to Cure Diabetes."
I want a cure so my son doesn't have to cry because his blood sugar numbers are high or low and he feels rotten inside and out. I want to say "yes" once when he eyes the M & M candy machine we walk past every time we leave the grocery store. I want a cure so I don't have to push down, again and again, that familiar rush of fear that rises every time I read about kidney problems, heart disease, blindness and amputations.
I want a cure so he can be released from the relentless beeping of his watch; the constant snacks. So that he doesn't have to eat only certain things at certain times. So that he doesn't have to eat when he is not hungry. I wish he didn't have to memorize all the “carbs” from his favorite foods. I want to look forward to birthday parties and Halloween again without planning, planning, planning.
I want a cure so we don't have to make up dark little jokes like how it's really hard being a pancreas. Making goofy math games out of counting carbs. But it's either laugh or cry. So we laugh a lot. We really do.
I want a cure so that a needle isn't the first thing he sees each morning. I want a cure so that a needle isn't the last thing he feels each night. I want my son to be able to sleep in. Just once. It's always knocking at the door, you know.
I want a cure so he can worry about whether some girl at school likes him, instead of worrying that the skin around his belly is a little lumpy from too many shots in the same place. Or worry what his next A1c test will be. I wish he didn't to have to be so strong so much of the time.
I want a cure so that I don't have to make up lies about why he isn't invited to some sleep-overs. I never again want to have to answer my son's cries as to why HE has Diabetes -- "Why does it have to be me?!"
I want a cure so I don't have to set the alarm for 3 a.m. when he is sick; or going through a growth spurt; or whenever his numbers are out of whack; to check his blood sugar. To wait in the dark with my headlamp shining down on the drop of blood that I pricked from his steady finger (he doesn't even wake up anymore) while I watch the digits slowly countdown. Wondering whether I will have to wake him up to give him some juice because if he's too low he could get brain damage. If he's too high I shoot him up with some fast acting insulin. And then I set the alarm again for another hour and a half to see if maybe he's in a coma or something. To see if I made the right decision. The responsibility pierces through my sleep.
I want a cure so he can ride bikes around our neighborhood without glucose tablets crumbling in his pockets. I want to go back to watching him run around a field in the sun, for hours, without thinking that if I looked away, my son might be passed out, lying in the grass. I want a cure so I don't have consider the even remote possibility that I may outlive my child....knock knock....
I don't want this job of being a pancreas. I just want to be his mother. I want his childhood back. I just want a cure.
Julian lives in Portland, Oregon with his mother Charlene, step-father Ed Mann and brother Paul Mann, 3. Feel free to e-mail us!
Charlene M. Mann
Julian and mom Charlene, taken when Charlene picked Julian up after his first Diabetes camp experience last August, 1998, at Gales Creek Camp, Forest Grove, Oregon.
Published April 3, 1999
Last Updated: Wednesday March 16, 2005 16:45:06
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