OUTREACH & ENGAGEMENT COMMITTEE
November is National Diabetes Awareness Month (NDAM). Please take some time to check out our T1D topics. We encourage you to share this information on your social media to help educate and raise awareness about Type 1 Diabetes.
Things most people just don't get about being a Parent of a T1D
Type 1 Diabetes (T1D) is a very complex and challenging disease, but what's most crippling is that it’s also an invisible disease and most of us do ourselves a disservice by making it look too easy. Make no mistake, living with and/or trying to manage Type 1 Diabetes is anything BUT easy. There is so much thought and consideration that goes into EVERY decision we make; every second of every day. It’s exhausting.
Here are some points to ponder. These happen to be specific to parenting a child with T1D, but I'm sure anyone who has or cares for someone who has Type 1 can totally relate...
Picture this, it's the middle of the night and you startle awake, hoping that your child hasn’t had a fatal low while you were sleeping. Imagine how fast your heart starts beating and the instant and primal fear taking over every cell in your body. Then, the wave of relief you feel when you hear them stirring, even though they sleep straight through their treatment snack. Now try getting back to sleep... good luck! It is near impossible to get back to sleep at 4 or 5am in the morning, after that emotional rollercoaster, as you subconsciously wrestle with wondering if your kid is okay or if you should get up to check again.
Most 'normal' people never consider how often a T1D parent would be mixing chocolate milk in the middle of the night or trying to force “just one more spoonful” of yogurt down a groggy child's throat who just wants to sleep. It sounds almost abusive, but when a T1D is experiencing a low, it's basic survival.
So many parents will never grasp how maddeningly stressful it is to give your child enough insulin for 45g of carbohydrates in a meal, only to have your child take one bite and suddenly lose their appetite, refusing to eat anymore - even though you plead that they must finish or they will have a dangerous low. Then there's the peanut gallery who just don't get it and often say things like, "if you don't want it / you're not hungry, you don't have to eat it", throwing you that glance implying you're being too strict... ummmmm, YES they DO!!
The general public will never understand all the parenting challenges that wonky blood sugars bring, or how a child with T1D's behaviour and personality can change when their sugars are high or low, or how hard it is to make decisions when your child doesn’t know why they are feeling a certain way unless they experience it all first hand - God forbid.
Try to imagine what it would be like to feel a moment of sheer panic whenever one of your other, non-T1D children wets the bed, is extra thirsty, or is starting to look a little inexplicably skinny (common symptoms of T1D).
The average parent will never know how challenging and life-threatening the average cold or flu suddenly becomes, with constant blood glucose (sugar) checks for potentially deadly ketones that can quickly lead to diabetic ketoacidosis (DKA), and making sure they get enough to drink no matter how much they fight it.
If you live in a house free of T1D, you won't experience the tears that well up watching your little angel trying to hold back their own tears when the injection or sensor/infusion site change is hurting more than usual.
To have to watch their face drop and their heart break every time you have to deny a certain snack or treat because of their blood sugar already being too high, and wondering with them, why they have to deal with all of this.
'Regular' parents don't get tired of always having to be aware of what their child's sugar level is, or if they've eaten enough to hold their sugars steady long enough between meals, or if they're being too active for the amount of insulin you already gave them.
Only parents of T1s know how much it stings when you receive a suggestion or “helpful” article from friends or family proclaiming a possible explanation for the cause of or cure for Type 1 Diabetes that is so off base and infuriating that you want to smack them, but you can't, so you just sit and wonder how people can be so ignorant.
How often we would have to explain the difference between Type 1 and Type 2, and that Type 1 is an autoimmune disease, not caused by sugar or diet, and that it cannot and never will be managed by diet and exercise alone.
How good it feels to talk to another parent who has been through all of these challenges and can relate in a way no other parent can, and how hard it is to make sure non-T1D siblings don't feel left out or ignored.
Only parents with children that face serious, chronic health threats understand how deeply and overwhelmingly grateful you can be for medical discoveries like insulin and for the dedicated and determined people who have inventions and improvements to the tools and methods we use to help us manage diabetes (not a cure).
We need a cure.
Inspired by a fellow Bestie and T1D parent, and by Carb Counting Mama.
DISCLAIMER: You are strongly encouraged to confirm any information obtained from or through this site, and review all information regarding any medical condition or treatment with your physician. PLEASE DO NOT DISREGARD PROFESSIONAL MEDICAL ADVICE OR DELAY SEEKING MEDICAL TREATMENT BECAUSE OF SOMETHING YOU HAVE READ ON THIS SITE.
Nothing is more impactful than the lived experience. Please send us your stories and photos for us to share throughout the month using the form, below or by sending us an email to firstname.lastname@example.org. If you'd like to be a part of the O&E movement, please let us know by using the form, below, to tell us where your passion lies, what your interests are, who you're connected to and how you can help.
Past NDAM postings:
T1D Stickers and Accessories | Driving with T1D | Pump Lingo | Dawn Phenomenon | Blood Sugar Management Get Diabetes Right | Foot Care | Sleep: the lost frontier | Glycemic Index | Medication Management