Things I Wish I Had Known on T1D-Day


Our son Liam was diagnosed with type 1 diabetes four years ago today. I’ve been thinking a lot about things I wish I had known on that very first day and the advice I would give my t1d-day self.

  1. He’s going to be O.K. He’s a smart, resilient kid. There will be days when he feels completely overwhelmed by t1d management, but most days it will just be a big hassle.
  2. You’re going to be O.K. You and Steve are going to be more tired than you were before, and you’re going to worry more.  However, this post t1d-day world will quickly become your new normal. Similar to becoming a parent, you will soon forget what life was like before the diagnosis.
  3. Just say no to horror stories.  If you see the words “dead in bed syndrome,” do not under any circumstances keep reading. The reality is that you and Steve are going to do everything that is humanly possible to keep your son safe. That is all you can do. Reading about t1d kids who have died in their sleep is not going to be helpful. It will only make you more anxious, and your son doesn’t need a more anxious parent.
  4. There are people who are willing to help. If it takes a village to raise a child, it takes a metropolis to raise a child with a broken pancreas. There are people who are willing and able to help. Let them.
  5. Give up the whole perfectionist thing. You are going to have to learn not to sweat the blips. I realize you will want the numbers to be perfect, especially once you get the continuous glucose monitor. They are not going to be perfect even if you are doing everything right. It’s a marathon, not a sprint. Correct, and move on.
  6. Don’t lose sight of that incredible boy. The boy who houses the broken pancreas is so much more than a series of blood glucose readings. I know you will desperately want to know his numbers. Ask him about his day first.
  7. There are going to be silver linings. You will always feel incredibly sad that your son has this chronic medical condition; that feeling will never go away. However, you will meet some really wonderful people over the next four years who will make the whole situation more tolerable. That school nurse whose name you don’t know yet is amazing. She’s going to take really good care of your boy. In fact, when he goes back to school next week, you’re going to feel like he’s safer when he’s at school than when he’s with you. Liam’s next school nurse will also be amazing. She’s going to give you a hug even on days when you don’t want to admit that you need one. Liam’s going to make some great friends at t1d camp (Yes, you’re going to let him go to sleep away camp, and he’s going to love it), and you will meet some really incredible people in the t1d community. You’re too freaked out to realize this now, but the endocrinologist who is on call this weekend is terrific. Stick with her.
  8. Clean out a closet. It’s pretty cute that you think that one shelf in the kitchen cupboard is going to be sufficient for storing all of the t1d supplies. It’s O.K. You won’t be a rookie for long.

Written by Susan Ramsey