The content of this post is friendly advice and experience from a mom of a Type 1 Diabetic. Nothing should be taken as medical advice, and you should always ask a medical professional when making medical decisions.
My son was diagnosed with Type 1 Diabetes, at the age of 4, in January 2021. Since then, numerous moms of newly diagnosed kiddos have come to me asking for advice and tips after just finding out their kiddo also has Type 1. My advice has been well-received, so I hope it’s helpful for you too.
So let’s just get this out of the way…I hate to be the one to say this to you, but…
I promise it gets easier.
No, but really. When you’re first diagnosed, you’re likely in the hospital, either after a super traumatic DKA episode (Diabetic Keto Acidosis) or your child is just having wild sugars and ended up there. You’ve also just been told that your child has a currently-incurable disease that he’ll have to deal with for the rest of his life. It’s a very overwhelming time. In addition, vital information to keep your child alive is being thrown at you from every direction. It’s scary.
Your child likely won’t get an insulin pump and/or continuous glucose monitor before they come home from their initial hospital visit. So you’re preparing to give multiple insulin injections daily, as well as multiple finger pricks to test BG levels. Once you get a pump (we have the Omnipod and love it) and a continuous glucose monitor (we have the Dexcom G6 and love it) life gets SO MUCH EASIER and things are so much more manageable. But it takes time to get there, #insuranceproblems. So just try to think of this as a temporary discomfort.
The fact that you’re scared means you’re a good mom/parent. So you’re already off to a good start. N that we’ve got that out of the way, let’s get to some practical first steps.
Don’t be afraid to ask questions.
If your child’s endocrinologist is anything like ours, they’re very smart and want to help, but they talk SO FAST. Even if they don’t talk fast, the information being thrown at you is so vast and so important that you might not retain it all on the first try.
Don’t hesitate to ask any question, big or small. They’re not stupid, and you won’t look stupid for asking them. Better to ask now than be at home at 3 AM and be totally confused about something.
Get the ball rolling on the pump and CGM before you even leave the hospital.
I’m telling you, the insulin pump (Omnipod) and continuous glucose monitor (Dexcom G6) will be sanity-savers for you as a parent and for your child, as far as getting poked a million times goes. The only hitch is that, because of insurance, it often takes weeks (sometimes months) to get these devices approved, ordered, shipped and delivered to you. So you want to make sure to ask your doctor how soon you can get started with the pump and CGM and what you need to do to get the ball rolling. We did this, and it still took 2.5 months for my son to get his insulin pump.
Prepare yourself for stupid people.
Here’s the thing about Type 1 Diabetes. It’s an autoimmune disease that is currently incurable, AND when properly managed and with the technology we are blessed to have today, a diabetic can live a full, happy and healthy life.
Because of this, a lot of people write-off the enormity of this life-changing and life-long diagnosis. You’ll hear things like, “At least it’s manageable.” and “Thank goodness it’s diabetes, it could be much worse!” I mean, how much does that totally NOT help a parent whose child has just been diagnosed with a chronic illness feel validated in their fear and pain?? I wrote a whole post on it here. It’s applicable to many different chronic illnesses, not just diabetes, and it’s worth sharing casually with your friends!
Find your positive supports.
People and communities who can positively support you through this time are going to be invaluable for your healing process. Here are some of my favorite online communities:
Moms of Type 1 Diabetics Facebook Group
Juicebox Podcast: Type 1 Diabetes (Podcast and FB group)
Parents of Type 1 Diabetics Facebook Group
Signs and Symptoms to look out for
Food Decisions: An OpEd to others regarding my choices with my diabetic child
Jewish Parents of Kids with Diabetes FB Group Good for Kosher questions, etc.
Aside from these groups, ask around for other parents of kids with diabetes in your local community. Talk to them, and find a small circle that can be there for venting and also advice when you need it.
Here are some of my favorite Type 1 Diabetic Influencers on Instagram:
As a reminder, never take medical advice from ANYONE online. Only take true medical advice from your child’s endocrinologist. Everyone has a different perspective and every child is different, so what works medically for another family, may not work for yours. I repeat, as your medical provider for true medical advice.
Now for the swag.
Okay, so your child is diagnosed with a chronic illness. Let’s at least make it cute! I spent the first night in the hospital searching Etsy for the cutest diabetes gear, and it paid off. I get compliments on my son’s gear all the time. I’ll link some of my favorites for you.
Bags and Travel Cases:
Diabetes Travel Bag – This is great to pack as a carry-on when you need to bring diabetes supplies for a trip.
Every day carry pouch – It’s just big enough to fit an insulin pen, travel case of glucose tabs and/or the transmitter for the Dexcom. Can be personalized.
A slightly bigger pouch option
Sugar Belts Diabetes Waist Bands – This is probably my favorite item we’ve purchased. Aside from the outstanding customer service, these waist bands make carrying supplies so much easier. We have the large double pouch option, and we use it to carry our Orange Link (ask in FB groups about this product — it’s amazing) and the phone we use to connect to my son’s insulin pump and Dexcom. He wears it on him, so it never gets lost or disconnected.
Adhesive Patches and Decorative Stickers:
PartTime Pancreas – These are my favorite stickers for the Omnipod.
T-shirts, Sweatshirts and Accessories:
Diabetes Awareness Kids’ Shirt
T1D Mama Sweatshirt – This shop is taking a break, but sign up for notifications when they’re back.
Tyrannosaurus Dex Shirt for Kids – This shop, Dia-Be-Tees, has the cutest stuff for kids and adults!
This is an extremely trying time for you and your entire family, and I certainly hope that this little bit of advice and resources help calm your mind, even just a bit.
You’ve got this! Your child is a superhero, and so are you. xo
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