Note: I am not a doctor or have medical training. I talk about Type 1 Diabetes from a parent’s point of view. Always consult your endocrinology team if you have any questions. I advocate for my child until he can advocate for himself. One month ago today, everything changed for my son. We found out he had Type 1 Diabetes – he went into Diabetic Ketoacidosis and was hospitalized in the Pediatric ICU for two days. You can read our story here. You can read our two week update here. A month later things are very different with him. While it hasn’t been an easy time, he is doing fantastic. He’s gained weight (almost 20 lbs!!), his color is better, he’s happier. While I wouldn’t wish this chronic illness on any child or adult, I hope he continues to thrive.
But me? I’m honestly not doing as well. I keep berating myself for missing it. I feel like it should have been spotted. So many behaviors and incidents are making sense now and I think it started between November or January of this past year. Am I right? We’ll never know, as I was told there is no way to find out how long he’s had it. I’m also mourning his chance as a carefree childhood. He’s got blood sugars to take at least 4x a day and insulin at least 4x a day. While we are getting a blood sugar monitor, I’m not sure when it will really arrive (and another thing to learn!) and we hope to get him on an insulin pump.
Now, my feelings are natural. I’m better than I was a month ago, but this is going to take a while to get me back to myself. This was a blow, but I try to tell myself, at least it wasn’t worse. He had very high blood sugar (500), but we caught this in time. He only spent two days in the Pediatric ICU at Cohen’s Children’s Hospital. He didn’t go into a coma. While it was awful to see him in a hospital bed with IV’s in both arms, begging me for a glass of water that first day and night (I could only give him ice chips), he was so much better once the insulin took effect the next day. He had a tough time, but from that first afternoon when they started him on insulin injections, he did it himself. While I steeled myself that I could help him do whatever he needed to do and I often take his blood sugar — insulin injections are all done by him. Every. Single. One.
As long as he continues to cooperate, as long as we stay vigilant, as long as we keep him on the right path — he will be able to manage this.
In the space of 30 days, I’ve learned all about how to count his carbs, how to figure out his dose of insulin, what to do when he goes high (yes, that’s happened often). My nerves have been shot. I can’t relax. But I have support. Loads of support and my husband has been so terrific. My family and friends have been terrific.
Finally, his blood sugar is getting down to a more normal point. He’s aware of when his sugars drop. We were on our way to the Ninjago Movie screening on September 5th when he felt weird. We took his blood sugar (125) and I called the Endocrinologist’s office immediately. His target blood sugar is between 80 to 150, so when he went down to 125, his body thought it was much lower. The nurse on the phone assured me that everything was okay, his body was just adjusting.
Now we don’t flinch if he has 125 for his blood sugar. Last week he had a blood sugar of 78 at lunch at school and I had to relax. The school nurse gave him some juice and he got a dose of his lunchtime insulin. We are in good hands at his school (more about that another time).
I continue to remain in awe of this kid of mine. He turns 12 in 6 days, Happy almost Birthday!
Note: I am not a doctor or have medical training. I talk about Type 1 Diabetes from a parent’s point of view. Always consult your endocrinology team if you have any questions. I advocate for my child until he can advocate for himself.
Please don’t berate yourself, because it won’t help or change anything (I know, I know easier said than done and mom guilt is soooo powerful a force!)
Your son (and by extension, your family) has been dealt a rough hand with his diagnosis, but thank goodness it’s something that you have tools to keep under control.
It sounds like your handling all of this with your signature strength, thoughtfulness and care–give yourself the credit that you deserve for raising a kiddo who is handling the situation so well. Amazing!
Thank you, Jessica, for your ultra-kind words.
You are doing remarkable! Especially for one month in! I’m so sorry for your son’s diagnosis, but the T1D community is unlike anything I’ve ever seen.
You’ve been part of the reason why I’m doing okay — support has been so important for this.