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Taming the Beast...A Story About Controlling Type 1 Diabetes

Type 1 diabetes is a quiet and invisible disease. It is so powerful and, most days, my little boy and I feel like we are trying to slay a dangerous beast.

  There is a Beast that lives inside my sweet four year old son Brady.  The Beast is unpredictable and very powerful.  The Beast has special powers.  It makes its self invisible and can turn a sweet little boy into a miserable child.  Weapons stronger than swords and cannons are needed to fight the Beast.  I know all about this Beast, because I have battled it for almost thirty years myself.  This Beast my son and I are fighting, is Type 1 diabetes.

  Most people know someone with diabetes.  Most people think they understand diabetes.  There is much media coverage about diabetes.  If you watch what you eat.  If you take medication.  If you lose weight.  Then diabetes goes away.  At least that is what many people think.  But most people don't understand diabetes and they really don't understand Type 1 diabetes.   Type 1 diabetes is about unlucky genes and lots of unknown factors that trigger its onset.  Type 1 diabetes is not about food or weight or lifestyle choices. I was diagnosed with Type 1 when I was ten years old.  I was actually diagnosed on my tenth birthday and had a party of my own in a hospital bed.  I was a thin and active child.  I was healthy, smart and very happy before my diagnosis .  My little boy was 3 and 1/2 years old when he was diagnosed with Type 1....just over six months ago.  He is a slim and active child.  He was born with an extra piece of his first chromosome and is globally developmentally delayed and is completely non-verbal. As different as my son and I are, and as different as our childhoods have been, our futures are very similar.  Brady was like me in so many ways when he was diagnosed.  Unsuspecting and unprepared for how much his life would change.  Unaware how quickly childhood would be replaced with worry, fear and responsibilities that no child should have to take on.  But my son did not need any new battles to fight, he already had more challenges than any three year old should have to face on a daily bass.  He already battles cognitive impairments, hypotonia, sensory issues and struggles to communicate...but then the Beast arrived and all the progress my son had started to make slipped out of our hands and more challenges surfaced.  Type 1 diabetes is a daily struggle.  Type 1 diabetes is not about weight or sweets.  It is about facing a Beast that can quickly break you and make you feel like you will never tame it.

It took me so many years to finally tame the Beast.  Type 1 diabetes controlled my life for so many years.  When I was a ten year old, and for many years following my diagnoses, I simply ignored the Beast.  Diabetes is not a condition you can see.  I didn't look any different and I didn't think I was really acting any different.  Diabetes was very easy to hide from people who didn't know me very well.  It was easy to ignore the feelings of exhaustion and irritability that come with having a high blood sugar, all day, every day.  In the "old days",  sugar and sweets were completely off limits for me.  So, I did what any young diabetic did, I would "sneak" junk food.  Oreos, sugar cereal, ice cream sandwiches at school and anything else I could eat without my parents knowledge.  Over the years, I started taking a little more responsibility for myself and how I took care of "my diabetes."  By the time I was in law school, I started to really feel the power of the Beast.  When the glucometer kept flashing numbers in the 400s, I realized the Beast was not a fan of intense stress, and unless I learned how to tame it, the Beast would win.  I finally went on an insulin pump.  I started paying attention to carbohydrate counting and learning to ride the roller coaster of up and down blood sugars.  The fog in my mind started to clear and my energy was at a level I hadn't remembered having since I was a young child.  Taking control changed my life.  I finally tamed the Beast.

In February, my very special little boy was diagnosed with the same dreaded disease.  It was a shock.  It was unexpected and I was unprepared.  As hard as I have worked over the years to take control of diabetes and not let it control me, I felt helpless and scared.  Watching my son struggle with high blood sugars and the headaches, irritability and energy zapping effects that come along with the highs and the devastating shakiness and confusion of a low blood sugar, broke my heart.  I let diabetes control us for many months.  We were afraid to leave the house because of shots, testing and meal planning.  Brady did miserably in school and we all became a little depressed.  The Beast was winning.  The Beast was taking over our lives...it was taking over my life again.

Somewhere in late spring, as a disappointing school year came to a close and summer schedules took over, Brady started fighting back and his little body started responding.  We learned to read his cues.  High blood sugars look one way for Brady and lows a little different.  We wrote down blood sugars and carbohydrates.  We have been vigilant with insulin doses and making changes when something doesn't seem to work.  It has been a battle.  Brady is nonverbal and cannot communicate how he is feeling, so like everything else in Brady's life, we have to try and read the signs he is trying to give us.  Brady is very delayed and cannot help with his daily diabetes care, but he is a remarkable little patient.  He sticks his tiny fingers out for blood sugar testing and sits still for his insulin injections.  He never fusses.  He even lets his big sister get a jump start on her future nursing career by letting her test his blood sugar, so she can always feel a part of Brady's hectic routine.  Brady is fighting the Beast with all his might and we are supporting him in every way we can.  Most importantly, Brady is winning.

Last week, I took my son to his endocrinologist appointment.  Like all specialist appointments, we had to wait a very long time in the waiting room.  As regular readers know, Brady has no patience and is not easily entertained.  Going to the doctor is a challenging trip, but I was determined we would make it through the appointment and get some more tips to help us in our battle.  After lots of waiting, some finger pricks and a quick physical exam, our doctor shared her thoughts on Brady's progress and delivered some truly remarkable news.  My little boy.  My strong little boy truly is winning his fight with the Beast.  Brady's hemoglobin A1C blood test showed a number of 7.8.  The target number for a child is 8.5.  The target for an adult...someone like me...is a 7.8.  Brady, with all his challenges and long road ahead of him, is winning.  The Doctor looked at me, with a wide smile and a sparkle in her eyes, and said,  "I don't know what you are doing as a family, but keep doing it, it is working.  The hard work is paying off and you are keeping your son healthy."  I know what we are doing.  We are being vigilant, disciplined and very determined.  Until a cure is found, the Beast will still hide inside our bodies.  Until a cure is found, the Beast will not be slayed, but with hard work the Beast can be tamed.  My son and I will continue to fight and we will hold on to the power of hope and never stop believing that one day, the Beast will be put to rest for good. 

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Amy Ronayne Krause September 27, 2012 at 05:34 PM
The Beast is a good way to name it Erin. I remember that day when you were 10. We were at Cranbrook. You did tame it and so will Brady. Kurt and I love you guys. Thank you for writing. It is very inspirational to me, and many others. Love, Amy
Amanda Ewing September 28, 2012 at 05:53 PM
Thank you for writing this. My daughter was diagnosed at 13 months and just turned 2 on the 14th. I dread our appointments and get anxiety over the A1C results. Hopefully in the future there will be a cure for type 1. Our lives revolve around numbers from the time we wake up to when we go to sleep. Thanks again! Amanda
Kristin Drummelsmith October 02, 2012 at 12:07 PM
My 7-year old daughter has type 1 (diagnosed a year ago). I can relate to when you say, "taming the beast". Thanks for sharing your stories.
Mike Ronayne October 04, 2012 at 08:14 PM
WE ALL WILL KEEP FIGHTING THE BEAST UNTIL WE GET IT UNDER CONTROL OR WE FIND A CURE A LOT OF GOOD PEOPLE ARE LOOKING HARD LOVE THE LITTLE MAN'S GRAMPA
dsdsdsds February 26, 2013 at 06:50 AM
Develop a personal meal plan that you will stick with. Speak with a nutritionist or a diabetic educator and be candid about your food likes and dislikes. Thanks. Regards, http://weightlosspunch.com/garcinia-cambogia-extract-dr-oz-calls-weight-loss-holy-grail/

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