Living with T1D

Sunshine was born smiling.  She giggled at everyone and the midwife was amazed at her big smiles, assuring us it was not merely gas.  She looked at me with such wise eyes full of love…it was remarkable.

When my darling little daughter was just 1 1/2 years old, something changed, though I couldn’t put my finger on it.  She became cranky and irritable.  She cried all the time.  I thought she was being an emotional toddler.  She had an insatiable appetite and was always thirsty.  She lost weight, despite eating as much food as me.  She smelled like she had just bathed in strawberry jam.  When she told me, in her very limited language, that her eyes were blurry and everything looked “wonky”…that unsettled feeling inside ballooned into a tidal wave of fear.

After a few visits to the pediatrician who dismissed me as a panicking mother, Sunshine spiraled downhill.  At the time, I did not know she was dying.  I couldn’t help her, though I knew food caused her to get grumpier.  I tried in vain to decipher what foods made her miserable.  It was no use and by December of 2010, it was clear we desperately needed something to change.  We decided to take her into the doctor on January 6, 2011 to get her looked at.  Because he was away that day, we trekked up to the ER at the hospital, all the while thinking we were over-reacting.  In the waiting room, she went limp in my arms and started to slip away, calling for me and repeating her need for water, more water, more water…

Luckily, a simple urine sample diagnosed her with Type 1 Diabetes…an auto-immune disease that requires her to be injected with insulin, every time she eats anything, for the rest of her life.  They managed to stabilize Sunshine and then loaded both of us into an ambulance to be taken to a larger rural hospital an hour away.  Sunshine was within hours of dying.

Our whole family lived in the hospital for 10 days, learning how to care for Sunshine’s needs.  We learned how to hold her down to inject her with needles, how to poke her fingers to check her blood glucose levels, how to revive her in case she went into seizures.  We were told we would become the experts.  We were told this was a 24 hour a day job, no vacations, no benefits.  For life.

Needless to say, the next 9 months were a blur of depression and fear and trauma.  I don’t remember much of that time of our life, of my youngest son’s early babyhood.  I cried every day, she cried every day…it was awful.  We had very little support at that crucial time…the local hospital didn’t know how to help, and neither did friends and family.

But one night, going to bed, I realized I hadn’t cried at all that day.  It turned into two days.  And then there were stretches here and there of four or five days.  The sun was shining again, brighter and brighter each day.

And here we are, in 2016, five years since her diagnosis.  It has been an exhausting journey of ups and downs.  By looking at her, you wouldn’t know that she is on life support.  (Because her insulin is life support ~ without it, she would die within a few hours.)  Sunshine is a happy, well-adjusted little girl who loves her friends and her chickens and homeschooling.  She has her moments of feeling overwhelmed and burnt out with the finger pokes and the waiting to eat and the vigilance we do as her parents, but mostly she is a regular little girl happy to wake up in the morning.

Part of that reason is her blood sugars have really mellowed.  She rarely has the huge sugar spikes and plummets that characterize most Type 1 Diabetics.  It is not because her diabetes is “better” or that it isn’t “as bad anymore”.  It is because we are on a limited carb diet.  We stumbled across a group of people who follow Dr. Richard Bernstein’s guidelines for “normalizing” blood sugars in a Type 1 Diabetic.  He doesn’t make it go away…there is no cure for T1D (yet).  But he advocates a diet with no grains or starches, and very little fruit.  It sounds limiting and unsafe to most, but Sunshine’s team of doctors are in full support of what we are doing…and the results are tremendous.  And contrary to what most people think, our diet is rich and satisfying with amazing dishes and recipes available to us form pinterest boards.  As Sunshine will say, “I feel so much better now…I can’t believe how bad I felt before we went low carb!”  (All five of us eat this way, too).  It also helps that Dr. B has lived with T1D himself for over 75 years.

There are still the worries, the fears, the pain I feel in my heart that my sweet girl has to suffer with this throughout her whole life…but choosing to eat this way has given us, for the first time, the confidence that we can manage her  T1D.

*Please know the signs of Type 1 Diabetes…you just might save your own child’s life.  We knew nothing about it the night before Sunshine was diagnosed…there was no history in either of our families for any form of diabetes.  And please please please act on any suspicions immediately. 

*If you are interested in the Low Carb approach to Type 1 Diabetes management, please read Dr. Bernstein’s Diabetes Solutions…It might transform your life, like it did ours.