I didn’t think I’d get to the point where writing this post would actually be a “thing”. I’ve struggled to come to terms with this permanent, life-long disease and what that means for my now-toddler son and our family’s future. I’ve done the “why me” and just wished for answers. Why my little boy? Why my family? Did I make God mad? I’ve even thought stupid thoughts such as “did God only want me to have 2 kids and so now he’s punishing me for having a 3rd?” We aren’t a vastly religious family by any standard, but I just always wonder why a higher power wanted me to be the mom of this little boy with a chronic, lifelong illness.
I don’t have those answers yet. Maybe in time, I will. I do truly feel as though I am meant to be exactly where I am in my life right now, though. It sounds cliche, but I do believe everything happens for a reason and I am trying to find my reason in this chaotic mess that is now my life. For now, I’m trying to be strong and help other T1 moms and dads in any way I can. I’ve come up with just a few tips to maybe, sorta-kinda make life a little easier?
I joined the Diapers & Diabetes group on the 2nd day in the hospital with Carter at diagnosis. I was desperate to connect with ANYone who might feel what I was feeling. Lost, scared, helpless and even traumatized. I swear the day Carter was diagnosed left me with a little PTSD, and trust me I don’t say that lightly. Joining groups on Facebook and connecting with other T1 families on Instagram was so incredibly helpful. Don’t be afraid to reach out! Even if you can’t talk openly yet, just read some of the others’ posts and you might just feel better being somewhere that people just like you “get it’. Follow ME on Instagram at @infants.and.insulin 🙂
I might be a little biased here because our endocrinologist was so adamant that we not leave the hospital without a Dexcom Constant Glucose Monitor (CGM). Carter was 6 months old at the time and I didn’t think anything could be better than a device that updated every 5 minutes to tell me his blood sugar. It was mostly accurate (within 20% most checks) and gave us a huge piece of mind – especially during the nighttime hours. If your insurance won’t pay for one – I’m hearing lots of “CGMS aren’t medically necessary” – find a Pay it Forward group on Facebook…there are several! With the newly released Dexcom G6, lots of families are posting older model G5 unused sensors and transmitters. Get your hands on those and utilize them as often as possible!
BACK IT UP
Whatever supplies you think you have plenty of? There aren’t enough- ever. Biggest suggestion I can think of for anyone new to the Diabetes world? HOARD! Go onto eBay, Amazon or Pay it Forward sites if you’re truly in need and BACK UP your stash! It doesn’t matter if you have amazing insurance and an on-the-ball endo… mistakes can and do happen and you do NOT want to be caught without supplies. Test strips, ketone strips, extra meters, glucagon, Dexcom sensors, pump supplies… get whatever you can, whenever you can get it. Trust me, it’s a huge piece of mind knowing that if one month there’s an insurance glitch, you’re covered. With my 16 month old, I can’t even begin the thought of not having a Dexcom sensor. So I hoard like crazy and try to extend the life of our G6 past the 10 day mark whenever possible so that the extra supplies stay just that – extra. Here are a few of my most utilized Facebook Pay it Forward Groups for Diabetes
PREPARE FOR THE WORST
I don’t want to scare you, nor do I want to sound morbid. But I wish someone had warned me for what could happen if I was NOT prepared. What could happen if I forgot the spare insulin at home or my “low bag” ran empty of life-saving snacks. I wish someone had told me that 2 vials of insulin was literally ALL I would get for 2 months and that preventing an accidental drop or smash of the insulin bottle was as vital as it now sounds. So I am here to say that as a new T1 parent, it is literally essential that you OVER prepare as you prepare for the worst.
- vialSafe Insulin Protectors are amazing. They prevent the ultimate smash of life-saving insulin vials and are so simple and affordable!
- Insulin “Coozie” Vial protectors are also great! They’re little coozies designed to fit various types of long and short acting insulin vials.
- Insulin coolers for longer trips help keep your insulin from expiring sooner than 28 days due to it getting to room temperature (at which point it will only be good for 14 days)
LIVE A LITTLE!
Don’t be scared of life. Really and truly – life is going to keep going on. Don’t hide because you don’t know what you’ll do the first time you have to check your child’s blood sugar in public, treat a low or give insulin. Equate this moment to when you first went out in public with your newborn. It was terrifying and you were shaking and you weren’t sure what you were going to do if *gasp* the baby should start crying while out in public. You weren’t sure you could handle such a meltdown where everyone was looking at you and (in your mind only) shaking their heads in dismay. YOU’VE GOT THIS. You do what you need to take care of your child and continue on. What your child needs to see most right now (for most new T1 children, anyways) is that life is still going to be ok. Life is going to be mostly normal for them and they’re still going to be allowed to be a kid. Take a deep breath and step out the front door. Just make sure you have all your supplies! 😉
Surprisingly, I feel a little more confident in my abilities as a T1 mom after having written this. I know what to do when my child is high or low outside our house now; I have all the oopsies supplies for all the mistakes I’ve already made (hint hint, dropped bottle of insulin)! Hopefully, if I can help just one new parent out by making them feel a little more confident in their own abilities as the already amazing parent they are, I’ve done what I set out to do.