If you are stumbling across this post because you have recently been told your child has Type 1 Diabetes…. Welcome.
Welcome and I’m so sorry.
Finding out your child is sick with ANY chronic lifelong condition is hard. Sometimes impossibly hard. But to then be told you must go home and BE the medical care your child needs to manage this condition can be so utterly overwhelming. I know, I remember, I’ve been where you are.
My own child was diagnosed with Type 1 Diabetes (or T1D) when he was 2. That was just over 5 years ago, at the time of this article’s original posting. My husband and I lived in Tennessee and also had twin 6-month-old babies and NO family around to speak of. Overwhelmed was the understatement of the century. So please believe me when I say…. I have been where you are now. I have sat stunned as the doctors unfolded our new life path before me. I have listened, half numb, as person after person told me ‘everything I needed to know’ and then left me alone to flounder. I remember. And I am here to tell you LOUD AND PROUD – YOU ARE NOT ALONE!
I had the great fortune of being surrounded by a few good moms who had walked the T1 Mama road before me….and I leaned more on their wisdom and insights than I realized. I have often repeated some of their sage advice to OTHER new Mamas to the tribe, and NOW I have a great JOY at being able to frequently find, and friend, new Diabetic parents and embrace them into this new world with arms open and ready to lift and support them. This is what I do. And it is with full understanding of your heavy burden that I now address YOU – my NEW Diabetic Mommy Friend – and tell you what was shared with me. God is NOT surprised by this diagnosis, HE IS HERE even now. God has prepared the way not only for this day for you…but God has PREPARED you and your child for the journey ahead. And wherever you are in your faith, if that statement seems too raw for right now please know it’s okay. If you are sad, it’s okay. If you are angry, it’s okay. If you feel so overwhelmed you can’t find which way is UP, IT’S OKAY! Sometimes when life throws a curveball at you, you must just embrace the suck. LEAN into the waves of grief as they hit…. You’ve earned a good cry, a glass of wine, a bit of a wallow, and even a nap. But then, my dear…. when the moment has passed…. it’s time to find your big girl panties, put on your super cape, bust out those boot straps, and get down to business! Let’s Do This!
First up, I want to share with you some of the lingo of a Type 1 Parent’s world. Just a few key phrases you need to learn so communication is a little easier. With the understanding that you have FULLY educated yourself on WHAT Type 1 Diabetes is. Here’s a quick definition for you. Unlike Type 2 diabetes who still make insulin, Type 1 Diabetics do not. The body triggered an Auto-Immune (i.e. NOT ANYONES FAULT) response that nixed the insulin makers in the pancreas. Thus…. Type 1 diabetes MUST inject insulin in order to survive and remain healthy. If you want to know MORE about Type 1 vs. Type 2, I have an article comparing the two HERE
Now beyond that here are some key Abbreviations you need to familiarize yourself with as they will be thrown around in doctor appointments and within the T1 community. This list is NOT complete nor exhaustive but it’s a great starter for the newbies out there:
A1C: Also, referred to as the HbA1C test, measures a person’s average blood glucose level over the previous three months. No matter what daily readings you get there is always “movement” in between so an A1C is a GREAT indicator of what your overall average has been and thus helps you know (by its DECLINE from the number at diagnosis) that you are on the right track. It’s just a number, NOT a judgement. Alas it’s also the reason I hold my breathe at EVERY endocrinologist visit when the doc walks into the room. I wait for them to tell me the A1C and I prepare myself for judgement. Hahaha. (side note for parents of teens….some teens FAKE their BG readings….an A1C will bust them every time and give you a chance to put them back on track with a bit of reality).
BG - Blood glucose (the measurement of glucose circulating in the blood); also known as BS (blood sugar). But frankly sometimes checking the BG is a bunch of BS cause T1D is an SOB and you just wanna yell WTH! Oh yea and sometimes they throw an F in front of it for FASTING Blood Glucose. But sometimes I wanna throw an F in front of it cause it’s F-ing BS. ;-) see what I did there….
CDE: Certified Diabetes Educator, a health professional who you have likely already met in the hospital at diagnosis. They are typically certified to teach people with diabetes how to manage their condition. They can often also be the main point of contact for assistance with prescription refills or juggling the math in between endocrinology appointments if you find yourself unable to get your kid within good levels. Learn their favorite drink or treat and bring it to all the appointments…your about to besties and you wanna be the mom they LOVE calling back!
CGM: Continuous glucose monitoring CGM is a sensor that is inserted through the skin and resides there for typically 7-10 days. It gives you a reading of your kids Blood Glucose every five minutes and was clearly invented by Angels who knew parents would NEED this level of micromanaging helicopter hovering ability. I can proudly say that ours was life-CHANGING (I’ll chat it up below) but you need one…like yesterday!
*deep breath mama*
DKA: diabetic ketoacidosis is a complication of diabetes that can occurs when a person hasn’t got enough insulin and has extremely high blood glucose levels (very common in new diagnosis and also in the case of ILLNESS which elevates Blood Sugars rapidly when the body fights off infections). High BG’s cause the body to break down fat and muscle for energy and this makes the blood acidic which can cause organ damage if left untreated for too long. The condition is fatal if not treated. – I know. It’s scary. DEEP BREATHE – it’s also largely avoidable. I make no jokes with DKA. DKA is not joke-worthy.
DX: Diagnosed Date. Also called D-Day or the Diaversary. Can be a challenge to embrace the first year, but within the T1 community those Diaversary days are kind of a big deal…celebrating each year your kid wins the fight is important for them AND you. So tell your diabetic they are a Diabadass by celebrating their Diaversary with a CAKE! SCREW YOU CARBS!
ENDO: Your kids ENDOcrinologist….the one you’ll visit every month or two at first, then eventually every 3 months and maybe even just every 6. They are part of your team…embrace them and find one you click with personally AND that really clicks with your kid! And if you get the privilege of having Dr. Amy Burton in Dallas, Texas – HUG HER and tell her how much we miss her cause she’s a doctor made of solid gold I’m just sure of it!
Hypo – Hypoglycemia (low blood glucose) is the really scary villains to watch out for on a daily basis and the reason to ALWAYS have quick sugar (glucose tabs or gel or a Glucagon needle) on hand at ALL times. If your kid’s BG is too low they may not be ABLE to really help themselves so you have to be prepared to help them.
I:C – Insulin-to-Carbohydrate Ratio. How many grams of carbs will be covered by ONE unit of insulin. It’s different for each kid and sometimes for each kid’s INDIVIDUAL meals as it can shift as the day goes on. For my kid, 1 unit of insulin covers 13 carbs at breakfast….and 10 carbs at lunch….but 15 carbs at dinner.
IOB: Insulin On Board (sometimes called DURATION of Acting Insulin) is a phrase used to describe how LONG it takes your kid to metabolize or break down the insulin injected. For some kids, it takes 4 hours…. others 2. There is no hard and fast rule on that one it’s more of a learning curve to WAIT and see what YOUR kid’s body needs. Once you figure it out though it helps you to know when you need to do an additional post-meal correction to a high blood sugar, versus WAITING cause his insulin on board is still doing its work and it’ll come down on its own.
ISF – Insulin Sensitivity Factor is similar to the I:C Ratio above but in reverse….sorta. It’s the About of Blood Sugar Drop that you will see with ONE unit of Insulin. 1 unit of insulin can drop my kids blood sugar 100 points. But 1 unit of Insulin will only cover about 13 grams of carbs. TOGETHER that also means that about 13 carbs of food will raise my son’s blood sugar about 100 points. SEE – MATH! (and every math teacher everywhere said “I KNEW YOU WOULD USE THIS SOMEDAY!)”
MDI: Multiple daily injections which is where most Type 1 patients start out on. Some will opt to transition over into Insulin Pump Therapy if it’s a better fit for their body’s needs and their lifestyle. Each has their own Pro’s and Con’s and really there is no RIGHT or WRONG between the two.
SQ- Subcutaneous fat layer just below the skin where injections are given and infusion sets are placed. My kiddo has a very lean build so we don’t have a lot of fatty real estate to work with. We protect our SQ like precious gems to avoid scarring of any kind!
T1D/T2D – Type 1 or Type 2 Diabetic. They are WILDLY different!
YMMV – Your Mileage May Vary. There is a common saying amongst the entirely of the T1 community. EVERY DIABETIC IS DIFFERENT! Each kid, each day, each situation is different. So just like I stated my kids I:C and ISF numbers, YMMV. Your kids’ MILEAGE MAY VARY! My kid crashes a solid 50 points if he plays in the snow. A friend of mine’s kid has a spike of nearly 100 points from snow play. My kid can’t have ANY free carbs because his I:C is so tight…but I have lots of friends whose kids can eat up to 15 carbs and not have issues. YMMV.
Again, this list is not completely exhaustive but it’s a GREAT start. You’ll hear many of these terms at every endocrinology visit. Likewise, as you begin to meet other T1 families you’ll hear these thrown around.
NOW….to the few things EVERY T1 PARENTS NEEDS TO HAVE ON HAND RIGHT NOW
Dexcom is a Continuous Glucose Monitor and is the apple of my eye and ABSOLUTELY the gold-standard in the business for accuracy. You insert it into your kid once every 7 days (I’ll be honest, I sometimes fudge that for longer) ….and it sends a reading to your kids iPhone or transmitter and then to the cloud to YOUR iPhone (and dad and gramma and anyone else who wants to have access) EVERY FIVE MINUTES. It alerts you to trends of rapid change as well as to your kid going Out of Range either too high or too low. You need one. NOW….you need one NOW. Call your Endo or CDE NOW and demand a scrip for one and then call Dexcom TODAY and get the process started. It’s a TOTAL game-changer in the world of helping your kid stay healthy and safe and no T1 Should be without it Ever EVER EVER!
Sugar Shacks – That’s what I call the stashes of various types of sugars I have around. And I say around because they are EVERYWHERE. I have a car shack, a purse shack, my kid has a mini shack in his T1 bag with him, my husband even has a shack in his office. There are Glucose Tablets, Glucose Gels, (cake icing in mini tubes can work too in a pinch) and juice boxes as well as small candies. And WHY are they everywhere you ask…cause sometimes kids are forgetful and do dumb things like leave the house without their supplies. And then you’re driving to the grocery store and your kid says they don’t feel good and your scrambling about the car floor board praying to god for a stale lost/dropped glucose tablet. – don’t judge….it was totally me! Thus, I keep sugar shacks EVERYWHERE. Side bonus….by organizing them into well marked containers you can ALWAYS get your hands on them and further more if you have a big BG crash you can dip into your purse for additional supplies etc.
Solid T1 Tribe a Mama can Vent to. I can’t stress enough this point. Your friends and family can be the MOST amazing people in the world but at some point, you NEED to be able to vent, rant, rage, cry, laugh, or whatever to someone who GETS IT! It’s crucial. Being a T1 parent is hard and sometimes T1 doesn’t play fair. You have victories you NEED to celebrate and sometimes you have struggles you NEED to cry over and having a tribe of people who get it, REALLY GET IT. It can be so soothing to the soul. Your family, your friends, they love you but they can’t be where you are; being a T1 parent isn’t their journey. So it’s crucial to your mental and emotional health that you begin to expand your tribe to find a few besties that GET where you are NOW. Thanks to social media there are LARGE groups of people already gathered to help you begin finding those heart-healing connections. Here are just a FEW of my favorites:
MOD Squad: Mothers of Diabetics and on Facebook (https://www.facebook.com/groups/Modsrus/) MODS also has an East Cost MOD Squad Beyond Type 1 also has a facebook group (https://www.facebook.com/beyondtype1/)
Healthy Place to Pray and a NICE fluffy Pillow. Now this is my favorite. I am a die-hard God-Fearing Christian woman and I lean heavily on my Jesus to get me thru my
days. I begin my days over coffee and a prayer journal and it can lift my mind out of that sleepy fog of night time BG checks and help prepare my feet for the day’s work ahead. Having a solid prayer life can be sustaining to you now and in the journey ahead and I HIGHLY encourage you to begin, NOW, finding a special spot in your home to just go to the Lord and UNLOAD your burdens. If all you can pray on is JESUS HANDLE THIS CAUSE I’M SWAMPED then so be it. But take all your cares and burdens and vents and rants and full strength crazy to Jesus and he will not only HEAR you but CARRY you thru those times. LEGIT – I’ve tested the theory many times. Then, when the days get rough, you need to find ANOTHER place (I prefer my bedroom) that you can go quietly and close the door. A place you can be alone and find a warm soft fluffy pillow. Take that pillow into your hands as you cry and take a deep breath and BURY YOUR FACE into that pillow and yell the LOUDEST EXPLETIVE CURSE WORD you can find! YOU HEARD ME! YELL and scream cause sometimes Diabetes is a dirty rat who hits
But then, my dear, when the moment has passed, it’s time to find your big girl panties, put on your super cape, bust out those boot straps, and look Type 1 Diabetes SQUARELY in the eyes and get mad and GROWL and say – BRING IT ON!
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