How do you keep it together when your baby, your first born, gets diagnosed with diabetes for his fifth birthday? How do you get him to follow you on the journey to find a new normal when the road for as far as you can see is crowded with injections, finger pricks, doctors, hospitals and uncertainty? How do you get him to take a road to a place where icons of happiness – birthday cake, lollipops and popcorn – evoke fear and panic?
Your desire to run screaming the other way couldn’t be greater so how can you possibly convince the little face, the pleading eyes looking up at you that this is the right journey to take and that he must start that journey RIGHT NOW – no warm up!
I feel like I want to bring some wisdom, magic trick, or tried and true answer to this question to give new T1 parents a “step by step” to surviving the cross over from life as you knew it to life as it will forever be for the foreseeable future – I wish, but I can’t.
You Are Here – You Can Do This!
You can do this because you have strength in places you haven’t had to look yet. You have the love for your child that will drive you to find the way to coach him how to have the confidence to manage and thrive in his new world. And so you begin. You take turns with your husband in the hospital room until you can manage to wall up your own fears and emotions for today and you begin.
The future flashes and you realize that things that you worried about for your kids before about happiness, school, friends, safety etc just hit a multiplier that would challenge the strongest math mind.
You pray that the bond between you can instantly make the monumental leap from “trust me” you’ll love preschool to “trust me” those giant needles will be OK.
This is an endurance event – he must trust you, you see it, you know it, tricks, bribes and lollipop rewards won’t get this done. The question comes – why are we here mom, I want to go home. Quickly you weave together an explanation in words that you hope will reduce his panic, with words that will evoke positive, strong images for you both to hang on to.
You tell him that you’ve just been given orders to start an important mission to go on a science adventure to go behind the surface and learn about our bodies. You find words like power boosters, clickers, special snack and good stuff to soften the terrifying world of injections, finger pricks and blood. But mostly you just start moving.
You move past the comments of the uninformed. You learn to master the art of the smile and nod as good meaning people tell you that it will become as routine as brushing teeth or that you can just get him on the pump then it will be easy.
You move onto to your “new normal” with a positive and calm demeanor because you know he is watching your every move and taking his cues on how to handle all the unknowns from how you are handling them. You package up your own fear, worries and sadness and save it up for night or for your brief times alone in the car.
So 6 months in I’m for sure not going to tell you that it’s just like brushing teeth but I will tell you that my son understands the difference between strong and weak food and the importance of “listening to your body”. He knows how to test his blood, he knows what numbers are “in the range” and which are high and of course he knows which numbers mean “special snack”! He proudly wears his diabetes wrist band and openly talks about it with his friends. He accepts the fact that we test blood 6-8 times a day and that eating means injections. And if you ask him, above all, he’s counting the days until he gets his very own diabetic alert dog (as of today his name will be Barky).
Diabetes is a family affair and while it makes me sad in places that I don’t have words for that my sons childhood has been colored by this disease it has also brought a strength and bond to our family that gives me the peace to know we are able to handle our future. Diabetes is a part of us but it is not the soul of us.
You Can Do This – You are in the company of millions of amazing T1 kids who teach us grace, resilience and above all show us that life goes on.