What It’s Really Like To Have a Child With Type 1 Diabetes
By: Angela Ameno
The last thing a parent wants is for their child to experience any pain. When they do, as this can often be inevitable in life, you help them up, dust them off and move on looking ahead to better days.
As the parent of a child with Type 1 Diabetes –
There is no bandaid, no kissing the pain away, no moving on without this disease in tow. That is hardest part of this. You can tell them they will be ok, tomorrow will be better but the truth is life is completely changed and there are no days off from this battle.
I will do anything for my child and have done everything I could to ease this burden since his diagnosis three years ago at the age of 9. I count carbs, weigh foods, make sure he always has his meter, snacks, and juice. The days march on without much thought to the routine of it all.
Your child looks normal to the outside world even though every second is consumed by this lurking burden.
Will his sugar be too high for test taking? Will it be too low for gym? Did I count lunch carbs correctly? It really can be a guessing game most of the time.
Then the night comes.
The nights are dark and it’s not always just because the sun has set. I still check his blood sugar while he’s asleep. Stumbling, trying not to wake him. 2 A.M. or 3 A.M…sometimes every few hours. Sometimes his tiny fingers poke through blankets as if he knows I’m coming and will keep him safe.
Other times I work to gently pry his arm from under his cocoon. Nights when he’s high he doesn’t even flinch as I find an open spot of skin for his insulin needle. There are nights when he’s low and the juice goes down quickly and others when he fights to suck on the straw and begs to go back to sleep.
It’s also in these quiet moments that it can hit me all over again. The uncertainty of it all. The forever of it all as I look at the hardened tiny fingertips spotted black from the thousands of needle pokes. I’m ok for now because I know I’ve got this, I’m somewhat in control.
But what happens when he’s grown and off on his own? Did I teach him enough about management? Will he wake up to check his own blood sugar? Where will the juice boxes or chocolate milk be? Would he know that although this is hard and constant that it should never stop him from anything?
This is probably the scariest part of it all. Teaching my child with type 1 diabetes to live with it and be healthy and confident will be my greatest accomplishment and give me peace.
However, my worry will never fade.
I have some more time for that so for now I’ll continue to find his little fingers under his covers and kiss him on the head a few extra times a night.
Just tell him it will be only 5 more years until a cure . That will give him hope.
We’ve been saying that for almost 10 years now. A cure always seems to be 5 years away.
I have a friend who was diagnosed when he was 15 years old. He is now 57 and he was told in 1975 there would be a cure in 5 years. So I will not perpetuate that falsehood about a cure anytime soon. It is a 16 Billion dollar a year industry, there is no profit in a cure.
Thank you for putting my thoughts into a blog post. Yesterday was a tough diabetes day in our house and this post hit the spot and I promptly shared it with all of my friends. Replace injections with finding his pump and bolusing a correction and replace begging to go back to sleep with growling at me and biting the straw. Thank you for your post.
Once he’s an adult, look into the possibility of an islet transplant. I am a Canadian woman diagnosed at age 16. I was insulin dependent more than 49 years until 2011when I had a transplant. I’ve been insulin free for more than 5 years now.