The Club No One Wants to Join
The "new normal" after your child's type 1 diagnosis
June 2013 — I remember when my son Jesse was diagnosed with type 1 diabetes at the age of 3. I picked up the phone and called a local chapter of JDRF. A mother of two young twin daughters with type 1 diabetes answered the phone and said, "welcome to the club no one wants to join, but we are glad you are here."
That stuck with me for the 10 years that followed as I helped other families deal with the terms "newly diagnosed" and "the new normal". Let's face it. We had all gone through the brutal realization that our children were going to take insulin injections, in some form, for the rest of their lives. We knew that counting carbohydrates had nothing to do with Jenny Craig anymore. Our normal lives were over.
What we might not have realized is how lucky we were. Yes, I said lucky. We saw the signs — the frequent urination, the lethargy, the gallons of water and milk being consumed, and the weight loss. We were scared. And we were fortunate enough to have pediatricians, family practitioners, and emergency room staff recognize the obvious signs of type 1 diabetes.
What we do not talk about in our closed circle of d-world friends is the fact that, quite frequently, parents take their children to their local doctor with those glaring signs we are all too familiar with and are turned away.
"It is a virus. Go home. Call us if it persists."
What parent wouldn't trust their pediatrician? Or family doctor? And what would you do if this was your second visit? Third? What about fourth? Would you fight? Would you trust them to make those all-knowing diagnoses?
What if you were the parent who traipsed your child back, time and time again, only to be told to go home. And then you go home and watch your child deal with the "flu." Only it's not the flu. And you finally bang that ER door down to FINALLY get that urine test or that finger poke. And you find yourself in the ICU with a child in severe DKA.
Death Due to Onset of Type 1 Diabetes
Yep, I said it. LOUD. It's happening. Often. What are my statistics to prove it? I don't need statistics because it is my phone that rings, my Facebook that blows up when a child dies at the onset of type 1 diabetes. "What did I do wrong? I'm a good mom. What did I do wrong?"
Those families would do anything to be part of the new normal, the newly diagnosed family. Instead they are on the outside, wondering what they did wrong because a doctor did NOT do the test they should have. Why aren't "we" regulating this? Why aren't we as a society requiring mandatory testing? Why is it okay for a doctor in Milwaukee, Wisconsin to be quoted in the newspaper after a 20-month-old child died, presumably due to type 1 onset, saying, "Well we aren't going to run expensive tests just because a child has flu-like symptoms."
Yet we as the large d-world community can keep telling each other on our social media how to stop this. But we already know the answer. So how do we get the message to the doctors and the nurses? Who do we push? What do we do? How do we save these children so they can become part of our community instead of wishing they had the chance?
My son was diagnosed with one simple finger poke and a kind nurse looking at me with sad eyes. Cost? The life of a child.
There's a waiting list, my friends. That's my point.
dLife's Daily Living columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team to find out what will work best for you.
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