Most people know someone with diabetes. “My uncle has diabetes. At least it’s not too serious. With all the advancements, I hear it’s easy to control.” Knowing a friend or relative with diabetes (any kind) is very different than living with it yourself… or being a parent of a child with type 1 diabetes.
“Things I didn’t know about being a Parent of a T1D Child”
By: Jesse Jost, T1D Dad
That your pulse races when you do the middle of the night check, hoping your child hasn’t had a fatal low, and the wave of relief you feel when you hear him stirring.
How hard it can be to sleep at 4 or 5 in the morning as you subconsciously wrestle with wondering if your kid is okay or if you should get up to check again.
How often we would be mixing chocolate milk in the middle of the night or trying to force “one more bite” of yogurt down a groggy boy who just wants to sleep.
How maddeningly stressful it is to give enough insulin for 45 carbs and then have your child take one bite and suddenly lose his appetite and refuse to eat anymore even though you plead that he has to eat or he will have a dangerous low.
The parenting challenges that wonky blood sugars bring. How his behaviour and personality would change when his sugars are high or low, or how hard it is to make parenting decisions when your child doesn’t know why he is feeling a certain way.
What it would be like to feel a moment of panic, whenever one of your other children wets the bed, is extra thirsty, or is starting to look a little skinny.
How challenging and life-threating sickness is now, with near constant checks for ketones, and high blood sugar, and making sure he gets enough to drink no matter how much he fights it.
How it tears you up emotionally to watch your little angel trying to hold back the tears when the injection is hurting more than usual, or to deny a certain kind of snack because his blood sugar is already too high, and you wonder with him, why he has to deal with all of this.
How you get tired of always having to be aware of where his sugar levels are, or if he ate enough, or is being too active for the amount of insulin you gave him.
How much it stings when you receive a “helpful” article proclaiming a possible explanation for the cause of type 1 diabetes, and you wonder if you were responsible or if this means one of your other children will get it.
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 can’t 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.
How grateful you would be for insulin and the people who have made inventions and improvements to the tools and methods we use to manage diabetes.
How diabetes can intensify the love you feel for your child in a way you never thought possible.
Type 1 diabetes is a very complex and challenging disease. It’s an invisible disease and most of us make it look easy. But it’s not. There is so much thought and consideration that goes into EVERY decision we make. And it’s exhausting.
One thing I didn’t know was how much I’d wish for the day I could say “my son used to have type 1 diabetes.” We need a cure.
What are some things you didn’t know about being a parent to a T1D child? Don’t forget to go to the Carb Counting Mama Facebook page and “like” it!!
I used to be a CNA in a public school healthhroom where we had several T1 diabetics that were under our care. I realized it’s potentially dangerous aspects and how to follow a doctors protocol BUT as soon as MY child was diagnosed, all that medical training flew out the door- I felt completely unprepared and helpless!!!! Nobody understands how this disease effects everyone 24/7 until it is a close family member that gets diagnosed!! I am always thinking, worrying, wondering about my son’s numbers, attitudes and basic health – nobody else understands how quickly a “common cold” or stomach virus can throw a diabetic into a health crisis. I pray for a cure SOON— I would hate for any of my grandchildren to have it one day and to have to see my children having to deal with the stress involved with parenting/caring for a child with T1 diabetes.
I’ve heard that from several people in healthcare professions. You know what you need to know for your job (and maybe some above and beyond), but you can’t truly understand the day to day unless you’re living with it.
The worrying never stops. It actually intensifies when they are living on their (alone) own. It was scary when he went off to college but he had suite mates, so there were people around. But when they live alone(totally alone) is the scariest!! The worrying of a parent of a T1d
never stops and age doesn’t change that fact.
Exactly! My son is only 8 and I’m already worrying/ planning what we’re going to do when he moves out. If he has roommates or a girlfriend, will they be reliable? Should he get a diabetic alert dog? Will he speak up for himself at work or University if he needs something? Where we are (in Canada) a lot of the coverage for children stops when they get older. Even at 8 years old, I’ve had conversations about if he ever needs insulin or other supplies and can’t afford them, he needs to come to me and his Dad and we’ll help him. It’s really awful that we have to think of all these things.
My 9 year old daughter was just diagnosed Tuesday. Last night was our first night home from the hospital. I didn’t know it was going to be so scary to go home. Carb counting, correction factors, double and triple checking my math to make sure I don’t give her too much insulin. It was a sleepless first night!
I didn’t know how it would make teaching my 8 year old that life isn’t fair such a concrete lesson for her and brother. Giving her juice or candy during a low but not giving him any because he doesn’t need it. Allowing him to have syrup on his pancakes when she can’t because, well at first because syrup is hard to dose for, so we got the sugar free kind, but now because she also has Celiacs and the syrup “may contain traces of wheat.” (The pancakes are made from just eggs and cream cheese these days). Which is another thing I didn’t know…. Celiacs and Thyroid diseases are common co-diagnoses with Type 1. How exhausted I would be, now making most meals hot and fresh, counting and measuring and label- scouring, not just carbs but to make sure it’s gluten free and avoiding cross contamination in my own kitchen as well as in public. How my own autoimmune disease would be exacerbated by the stress of caring for my daughter and now I just want to rest all the time and my husband is frustrated that I’m a stay at home mom but don’t have the emotional or physical energy to keep up with the housework or to exercise because my thyroid disease also makes me tired and gain weight and I probably appear to others as increasingly lazy and fat. How family members still wouldn’t “get it” no matter how I explain or how many posts I make about T1D on Facebook. There’s a lot more….. but the children want breakfast…. oh, I didn’t know how much I’d start dreading mealtimes.
Yes, multiple autoimmune diseases are common. T1D and Celiac is a very tricky combo. Let alone adding your own thyroid condition. Each one in itself is exhausting. It’s amazing that you’re dealing with that combo. ❤️
My daughter has 3 children who are Type 1. This says it so well of what a parent and child go through every day. My heart breaks for the life you have been dealt and all families and diabetics in this world who live under this constant stress. We are always told and we see how life can be worse, but it still hurts.
Thank you, prayers for your son, you and your family,
I am 47 years old and have lived with Type 1 since I was 18 months old. 46 years. I am SO thankful for my parents who had one of the toughest parenting jobs ever. They squeezed my diapers to get enough urine to check my sugar! Made me drink my milk- the yogurt in this writing got to me! I remember them begging me to eat or encouraging me to go run outside, Tiff! Or chasing me around the house to give me my shot. Also, keeping my attitude to be thankful I can do normal things, just with some extra work.
I was so amazed when I got my Dexcom G6 and was able to go 10 days without sticking my finger, but was so emotional because for the first time in my life my parents could look on their phone and see my blood sugar!! Amazing.
How difficult it was for my mom to drop me off for 1st grade, then off at cheer camp, college,- especially college!! Then, the night I said my wedding vows, but they were so thankful the awesome man I married’s best friend was type 1. He knew “some” about the lifelong commitment he had committed to love and take care of me forever.
Type 1 parents are incredible and I forever am grateful to God and my parents for my health. All those incredibly hard years of raising me, enabled me to live past the 30 years the drs told them when I was diagnosed, the ability to endure at he extremely difficult pregnancy of our amazing son and also adopt our precious girl. Teach school for over 20 years. Thankful. Blessed. Grateful.
Keep it up parents!!! Many Jewels in your crown one day!💗💗💗💗💗💗💗