I’m reaching out because my 6-year-old son was recently diagnosed with Type 1 diabetes last week, and if I’m being honest, I’m struggling emotionally.
I’ve spent the last several days learning about insulin, blood sugars, carb counting, and everything that comes with managing this disease. The medical side is challenging, but what I wasn’t prepared for was the overwhelming grief, guilt, and worry that have come with this diagnosis.
I find myself grieving the life I thought my son would have, worrying constantly about his future, and questioning everything.
My son has been incredibly brave through all of this, and I am so proud of him. The endocrinology team has been wonderful and has given me a lot of confidence in the medical management, but emotionally I still feel scared, heartbroken, and overwhelmed.
I’m hoping to connect with other parents who remember those early days after diagnosis. How did you cope with the grief and anxiety? When did things start to feel less overwhelming? I’d love to hear from anyone who has walked this path and can offer some perspective and encouragement.
Welcome to this forum. One thing I can tell you that it will get easier. I felt, like most, the overwhelming pressure to learn everything fast and make all these new decisions 100% correct to keep my kid safe. T1d doesn’t work that way. Take one step at a time, make mistakes and learn on the way. You got this.
Hi @zashapiro and welcome to the forum. I’m not a parent but was a kid with Type1, diagnosed 63 years ago now and I’m doing well - and there are people here who have had it even longer than me. Your little guy sounds like a trooper, and I think sometimes kids adapt more easily than their parents do. Please don’t feel guilty - nothing you did caused him to develop Type1 and I don’t think you could have done anything to prevent it. And while he/you will need to make some adjustments to things, having Type1 does not have to prevent him from doing much of anything - there are a few careers that are out of reach but for the most part it’s our own attitudes that determine what we will do it become. There are extreme sports enthusiasts; a Dancing With the Stars pro; musicians and actors; a model; pro athletes; a Supreme Court Justice; and one new member of Congress in our ranks.
It’s a shock right now but hopefully in time you will be able to focus on what he can do rather than what he can’t. You’re fortunate to have a great team in place - and that includes you.
@zashapiroHi Zoe, and Welcome to the Breakthrough T1D Community Forum! I’m not in your parenting situation as none of my kids or grandkids [youngest almost 21] have yet developed diabetes of any of the several varieties, but I will offer some insight from many years living with this autoimmune diabetes; I was diagnised in my teens and now in my late 80s.
A diabetes diagnosis is not the end of the world for your on or for you but rather that diagnosis may provide you with the motivation to move onward in a healthy choices’ manner - NOT to imply that you have been doing otherwise. To ease your conscience, believe that you didn’t do anything wrong to cause his condition and that there most likely wasn’t any way you have prevented his condition. Also, diabetes could be a blessing in some ways; in my instance, I have outlived more than 2/3 of the guys in my graduation class.
My suggestions include that you let him just be a boy, enjoy a full, active life (as you had planned) and try not to be overprotective. With good diabetes-management skills there isn’t any career path that is not open to him - let him explore.
Learning good diabetes management skills could be a life-long adventure for him - I’m still learning.
Hello @zashapiro welcome to Breakthrough T1D. You have a tough job, and every parent will re trace their steps and play it over and over looking for that thing they did wrong (looking back), and looking forward, parents will die on the hill of trying to be perfect. I have to tell you, nothing anyone did was wrong, nothing anyone did or did not do caused Type 1. Also, blood sugar “control “ is sloppy, it’s messy. Mistakes will be made, 2AM lows and 400’s out of nowhere will happen. And none of this is bad or wrong or a failure. I know exactly what your kid will be. He will be your kid and will make you proud and make you cry in ways you do not yet understand. I also want to say that this grief, this loss of “health status” has to be dealt with. Kids watch every single nerve in your face and every octave in your voice and will absolutely take your sadness personally, as if they caused it. You cannot hide a thing from them. Do take care of yourself, it’ll paint a picture that says when we have a setback around here, we take care of ourselves. Reach out to this group, we have thousands of collective years of experience here.
