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Elizabeth's Story

Insulin Pumping Since Age 4

elizabeth and her insulin pump named emily
Elizabeth posing with "Emily"

 

Diagnosed 01/15/2004, Type 1 Diabetes

Elizabeth (now age 6) was diagnosed with type 1 diabetes at the age of only four years old.  She was heavily into diabetic ketoacidosis (DKA) when we arrived and the hospital and she lost consciousness literally as I pulled up to the emergency room entrance.  It was not until much later when I understood more about diabetes and DKA that I realized just how close we came to losing her that awful day of diagnosis.

The first few weeks

My child went through dramatic changes in temperament.  She ran from me every time I entered the room, fearful of a sugar check or needle stick.  My loving, passive, carefree, little angel yelled at me, threw things, and even punched, kicked, bit and slapped me.  But it was the hurting in my heart and soul that bothered me most, and the endless guilt that somehow I did this to her, for I too, am diabetic.

Elizabeth rebelled against shot therapy and "feeding the insulin." She would simply refuse to eat after her injections.  It took tears (my own), begging, bribing, pleading, and tempting her with favorite candy to cover morning insulin.

After the shock of diagnosis wore off I felt totally isolated; trapped in a world from which there was no escape for me, or for my young daughter.  Yet, there were also moments of quiet reflection during which I marveled at the little girl sleeping next to me; grateful that she was still alive.  "I can do this," became my mantra at 2 a.m. when everyone else was sleeping and I was sticking Elizabeth’s fingers still so tiny and bony from all her weight loss that came before diagnosis, that three of them together were barely is thick as one of mine.

Elizabeth developed an almost immediate allergic reaction to intermediate- and long-acting insulin.  But this “curse” turned into a blessing because she was placed on an insulin pump not long after her reaction.  On a pump, she could take rapid insulin and avoid the 6 or more shots she had to take each day without NPH insulin to mix into her regular.

Emily, our new friend

Three days into pump therapy, 4-year-old Elizabeth proclaimed that she had her control back.  Gone were the 6 a.m. shots and subsequent food wars -- she could sleep, and eat or fast; whatever her mood dictated.  A few days later she named her pump Emily, and formed a strong emotional attachment to her “friend.”

By age 5, she had mastered the art of bolus.  She has an older style Animas pump (we have a newer one but she refuses even to this day  to give up Emily) that requires a lot of button pushing to send a bolus; but she can do it (I double check to make sure she puts in the right number).  She also began performing her own finger sticks at 5 and can read and correctly interpret the readings as high, low, or “good.”  None of this was placed on her shoulders, she asked to do these things because “Emily” helped her and she wanted to help Emily.

Life after diagnosis

Now, just past two years since the night I prayed over her hospital bed looking for any sign of hope, life goes on.  We have been through a lot the past two years but just as my doctor counseled me in the hospital would happen, Elizabeth adjusted faster and better than I have to her diabetes and I attribute a large part of this to family support and to being on an insulin pump.  She takes her canula in the tushie or tummy like a trooper but I still cry in secret every single “needle night.”

Insulin pumps are not a cure any more than insulin is, and, they are not a suitable treatment approach for everyone.  They have many benefits, and especially positive are the psychological gains of pumping, but they are also more work than shot therapy and pumping requires unwavering 24/7 care commitment from parents -- and a child who is ready and willing to walk around with a device that keeps them alive.

I saved Elizabeth’s syringe from her “last” shot (actually, she needed a few more when her pump “drowned” in a pool from a hairline crack).  I took a picture of her body as she climbed into the tub the night before she went on the pump – I counted 15 Band-Aids stuck all over her injection sites (and that was from only 52 hours worth of shots). 

"Emily" gave us back spontaneity and freedom from the ritual of shots but Emily also serves as a visual reminder to all that see her that Elizabeth has a special condition that could take her life at any given moment should I be inattentive.

For anyone that does not have diabetes I want to state something to ponder:  diabetes may not be a fatal cancer that has a definite and sad outcome, but diabetes is incurable and the wrong care, or lack of care could kill my child within a single day, or even in a matter or hours. Living with diabetes is like living in a war zone that requires constant guard because the enemy (diabetes) never rests.

In the past two years I have learned that life is unfair, and to be convinced of this one need only turn on the evening news.  But I have also tasted how lovely and precious and beautiful life is:  To be convinced of this, I only need one of Elizabeth’s hugs.

With or without diabetes, I am eternally grateful to have Elizabeth in my life.

Lahle Wolfe
Founder Islets of Hope/IPump.org

 

    

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Page Updated 01/22/2006