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A message to friends and family about our son’s type 1 diabetes:

A few months ago, our son Luke was diagnosed with type 1 diabetes, and we’ve struggled to express what that means without overtly complaining. Result is, we haven’t said much. πŸ™‚ So here’s a stab at explaining how our lives have changed and why we’re often glassy-eyed or distracted these days:

What type 1 diabetes is and isn’t:
It’s an autoimmune condition where your body attacks its own pancreas and kills the insulin-producing islet cells. Result: your body cannot produce insulin, and you need insulin injections (via shot or pump) every few hours for the rest of your life.
It cannot be cured, outgrown, or can it be managed via diet or exercise – that’s the more common “type 2” variety of diabetes, where the body still produces insulin but has become largely resistant to it.

Type 1 can be fatal inside a few hours if blood sugar drops drastically, or fatal inside a day or two if blood sugar goes too high – you’re always “one cupcake away from a coma,” as one commentator said.

Imagine your only option for heating your house during deep winter is a combination of kerosene, matches, and a fire extinguisher, with no stove, hearth, or place to contain the fire. You tend a fire in the middle of the floor and try to keep it from burning down the house or going out entirely. Inbetween all of this, you try to get on with your life. This constant balancing act is essential to managing type 1 diabetes: the trick is to balance insulin and food without freezing (going unconscious) or burning the house down (going into a sugar-fueled coma).

Luke’s on an insulin pump and is doing well, but since toddlers’ bodies are constantly growing and changing, his blood sugar likewise swings up and down, keeping us on watch. We prick his fingers every few hours to test blood sugar, weigh everything he eats and calculate the carbs, tell the pump how much insulin to administer, and check him at 3am most nights – sometimes more frequently. Innumerable things can send blood sugar soaring or plummeting, aside from food and insulin: happiness, sadness, anger, a good game of chase, a cold, the location of his insulin pump insertion, or any new sitation. In the life of a toddler, that covers a lot. πŸ™‚

It has been hard. We’ve been grateful for encouragement from other parents and adults with type 1 and for support from family and friends. Some days we manage to be thankful that Luke’s alive and his condition is knowable and managable, and some days we run on exhaustion, fear, or grief. We’re discovering far too many people know someone with type 1, supposedly a rare condition but mysteriously on the rise (no cause has been pinned down). If this is your first encounter (I knew nothing before Luke was diagnosed), this gives you an idea of what it’s all about. It will get easier as we learn more, he gets older, and technology improves – for now, we’re just hanging in there.

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5 Comments Post a comment
  1. Brandy #

    My 2 year old daughter has just been diagnosed with Type 1 Diabetes. I have never in my life felt such a variety of different emotions. I am so glad to have found your blog. I will be following it. Please feel free to pass on any and all information and tips you have. Thank you so much for making this blog.

    February 9, 2011
    • There are so many great blogs and online resources out there – glad this was somewhat helpful, and hang in there! It does get easier, and kids are amazingly reslient. Best wishes to you all!

      February 12, 2011
  2. Katy #

    Hello, brilliant: “your only option for heating your house during deep winter is a combination of kerosene, matches, and a fire extinguisher, with no stove, hearth, or place to contain the fire.”

    August 8, 2014
  3. Katy #

    Reblogged this on Bigfoot Child Have Diabetes and commented:
    This explains it perfectly. I wish I’d read this three years ago! “Imagine your only option for heating your house during deep winter is a combination of kerosene, matches, and a fire extinguisher, with no stove, hearth, or place to contain the fire.”

    August 8, 2014
  4. Kim #

    Thank you for sharing this. I love the fire analogy.

    August 8, 2014

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