To Other T1 Parents… I Get It

Admittedly, I stepped away from blogging for several weeks. I read all these articles about how to write a good blog post and post content that people will want to read…but how am I to be expected to put together an “exciting” blog post when I am truly clueless about this niche content? I put my hands up in defeat for the moment and admit I don’t know what I am doing. Not in the slightest. How am I to give advice to other people, or even offer my comfort to others, when I am so outside my own comfort zone and expertise right now? I’m only 7 months into this horrid diagnosis. I don’t sleep, I spend my nights drifting in and out of sleep, only to wake up, roll over and check my son’s Dexcom on my watch. And then I spend the next ten minutes or so calculating why he is the number he shows. Is his basal night levels too low? Should I do a small correction or leave him alone? Is his number because I didn’t give enough insulin at dinner, or is it because I overshot his dose? I’m a mess; certainly in no position to give advice to anyone else.

 

So this post will just be offering comfort to those other parents in my position who found their world completely upside down in just a matter of a few hours. One fateful date changed the course of my and my family’s entire lives. I was “normal” once; I ran an in-home daycare, got to keep my babies at home with me while doing this and made a decent income for my family. I had a minivan and a busy schedule full of karate and gymnastics classes, pickups and dropoffs of children at different schools and summer events to keep my kiddos busy. I got my Bachelor’s degree in Child & Adolescent Psychology and loved working with kids. In October 2017, I was finishing up my degree and had started interviewing for ABA Therapist positions, working with children on the autism spectrum. I was torn between whether or not I was going to continue daycare during the day and work as a therapist in the early evenings or if I should just stick to one job until all three of my kids got to school age. I had dreams and couldn’t wait to touch the lives of other children and their families.

 

But we all know where this is going. Suddenly I found myself as the mother of a Diabetic infant, having absolutely no clue where to even start with his care. I had words thrown at me I’d never heard before; “humalog”, “ketones”, “levemir”, “lancets”, “CGM”, etc. As smart as I’d always been confident I was, Diabetes set me back 10,000 steps. I laugh at how tired I thought I was in Carter’s early infancy; at least then when I did get to sleep it was peaceful and restful. I didn’t worry about alarms not going off when necessary or waking up to an infant in a coma from low blood sugar or with acidic blood from lack of insulin when his pump failed. I was blissfully ignorant to all these things prior to November 2017.

 

I want to let other parents know they aren’t alone in their feelings. I see so many Instagram posts about feeling so lost and unsure and helpless and I just want them to know I am right there with them. From what I have learned in this short time, it’s that Diabetes isn’t going to be manageable, particularly with infants, toddlers and young children. They grow everyday, their routines change, they have super active days and lazy days; all of which affect their insulin needs. While I am super jealous of the posts I see where Dexcom displays a nearly straight line for 24 hours, I know this isn’t reality right now or even in the near future for Carter. And THIS IS OK. It doesn’t mean we are doing a bad job at managing our children’s diabetes. If they aren’t in a coma from low blood sugar and are not in DKA or having ketones, we are doing something right. Sure, our endocrinologists and Diabetes Nurse Educators might want us to try to titrate doses a little better to try and get numbers that are more manageable, but this is going to be a lifetime goal, not an everyday one. All we can do is the best we can and the best we know how. Learn from each other and each other’s mistakes. Because…

 

We are going to make mistakes. We are going to forget to change a lancet on lancing devices, forget to change a pump site, accidentally knock out a Dexcom or insulin pump site, forget to give insulin doses, overshoot insulin doses, drop insulin vials and sleep through Dexcom alarms. And we have to forgive ourselves and keep going. Our kids lives depend on us being strong and holding it together and being brave for them. It doesn’t mean we have to be perfect; that is unrealistic. Diabetes is a whole new dragon that has to be managed as best we can. There is no winning or losing to Diabetes and this is a concept I am still admittedly having difficulty with myself. I’ve had really good days where I screen shot the Dexcom nearly every hour, so proud to see something gone right for once. I also take photos of the bad days where we go up a huge mountain and then come back down twice as fast and ask for advice from the Diabetes community on where I went wrong. I’m trying to learn as much as I can about this disease, including reading books about managing Diabetes with children (a review post of these books is sure to come, I promise!).

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