Candy Hearts Blog

It's a sweet adventure full of gluten free goodies!

Candy Hearts Blog - It's a sweet adventure full of gluten free goodies!

Dear New Friend (The one whose child was just diagnosed with Type 1 Diabetes),

Your sweet child (no pun intended) was just diagnosed with type 1 diabetes. I know you woke up today in the haze of this whirlwind, and I realize you may wonder if this is actually reality, or some weird dream-like state of consciousness you never knew existed. Whether you are familiar with what type 1 diabetes is or not, you are probably in shock and doing your best to take in the enormity of the situation without panicking.

In the coming hours, days, weeks, and months you will have information thrown at you from a million directions. When you turn to the internet, it’s possible you’ll end up tripping and falling down a rabbit hole you never saw coming. In this age of technology, there are a million people with a million opinions waiting behind every click. Unfortunately, not all of the information at your fingertips will be helpful — or accurate, for that matter.

2015 marks the 10th year since my daughter’s Type 1 diagnosis. She was diagnosed about three weeks after her 2nd birthday, and we’ve stumbled around this block a time or two. From being told to “suck it up” to a suggestion to try feeding her camel’s milk (because I always wanted a pet camel, right?), I’ve heard a lot of stuff on this journey.

With that in mind, I wanted to give you 10 useful tips (in no particular order) to help you figure out how to plant your feet in the right direction:

BUT FIRST!!!!! This is a long post. I mean…it’s been TEN years for us…so TEN tips adds up. I just want to say that if you don’t feel ready to read this right now, that’s okay. Type 1 diabetes is here. It isn’t going away. You can always come back to read this another day.

1) You will, no doubt, deal with a range of emotions as you go through the motions of adjustment…and beyond. I want you to know that it’s okay if you aren’t feeling “happy happy joy joy” every minute. It’s okay to be angry. It’s okay to cry. It’s okay feel frustration over the financial toll, sleep deprivation, and stressful impact type 1 diabetes will have on your family. Pretending any of that doesn’t exist won’t make it go away. Acknowledging the challenges doesn’t mean diabetes “wins”. It means you’re facing reality.

Whenever possible, face it – don’t fake it. Your emotions are validated. Justified. Heard. But you are also the parent, and that means you won’t allow life to fall apart either. You’ll do what needs to be done — even when you’re feeling down — because that’s how you roll.

{Further reading: I wrote this post detailing my emotional journey when we got to the 5 year mark — now we’re standing at the brink of 10 years, and not much has changed.}

2) There isn’t a magic cure. Well-meaning people will offer up all kinds of solutions to try to help your child. I say “well-meaning”, because I’d like to think they aren’t intentionally suggesting you try things that could kill your child. I won’t link to some of the outrageous propaganda here (because I don’t want to give them click stats, and also because I don’t want to send you down the wrong path), but cinnamon won’t cure your child…neither will any special combination of foods…or eliminating a food group altogether…or trying an exotic essential oil…or giving your child a variety of supplements…or trying a specialized exercise program.

Insulin is NOT your child’s enemy. Insulin is a hormone essential for life-sustaining function. Without it, people die. It is the ONLY treatment available for the management of type 1 diabetes. Remember, prior to the discovery of insulin, T1D was a universally fatal disease. No one survived…despite trying every herb, every oil, every diet, every exercise, every everything…everyone died. No one was spared.

Insulin saved your child’s life too.

{Sidenote: You’re child may enter something called a “honeymoon phase” after being diagnosed. For awhile, it might seem like diabetes has disappeared, but it hasn’t. I’m sorry.}

3) There will be no shortage of advice. Once you begin to integrate online, you will find there are as many opinions about every detail as there are details. Remember when you were a new mommy and got sucked into the vaccine debate? Or the breastfeeding debate? Or the cloth vs disposable diaper debate?

Yeah. Like that.

Do you change your lancet with every poke? Did you check ketones with every BG over 250? DO YOU — USE AN ALCOHOL WIPE FOR EVERY INJECTION????? The list is long, and the commentary is longer.

Here’s a tip: Don’t pay attention to any all of it. Do what works for your kid, and let another mother do what works for hers. Take what you find helpful, and leave the rest behind. That’s all there is to it. Pick and choose what (and who) you want to spend your energy on.

Along those lines, be aware that sometimes people will interject themselves into your crisis. And, make no mistake, right now — in the aftermath of your child’s diagnosis — this is a time of crisis as you adapt your new normal. There are some people who are just constantly in a state of drama. They come on strong, act like they know everything — been there/done that, and monopolize your time with their theatrics.  They’ll constantly compare your situation to theirs. They turn every conversation around to be about them, and they never stop to listen. Every day is a new dilemma for many of them, and you’ll grow tired of listening to all of their struggles while trying to balance your own.

You don’t have to make time for all that right now — or ever, for that matter. It’s okay to avoid them. Unfollow. Defriend. Block. Whatever it takes.

Catch your breath.

4) Ask for help. You are going to need someone who can check your child’s BG, count carbs, and help give insulin. You will need someone who can watch your child for an hour or two at some point in time. I know it might feel impossible right now, but be honest when people ask you what you need.

Sure you can always use help with dinners, and errands, and all that good stuff…but for the long haul, you will need someone to be willing to step up in this area. Tell your friends and family you need them to learn everything they can so they can help you take care of your child.

Not everyone will be willing, but someone probably will. You might be surprised who it is.

5) Technology is out there.  When it comes to diabetes technology, there’s a lot of information to absorb. From glucometers to insulin pumps to continuous glucose monitors (CGMs), there’s plenty to learn. While I feel inclined to tell you to cross those bridges when you’re ready, I also feel obligated to let you know that technology has, literally, revolutionized this journey for us.

#1 – The precise micro-dosing offered by the insulin pump helped us stop the horrible low blood sugars that were causing my little 2-year-old daughter to pass out repeatedly. {She wears the Animas PingHERE’S WHY, if you’re interested.}

#2 – Yes, she did begin carrying a cell phone at 9 years old. It was a game changer, and my only regret is we didn’t get one for her sooner. Putting a cell phone in her hand gave us a direct connection for the times we couldn’t be together…like, for example, when she was Toto in the school play and stayed after school twice a week for most of the school year; and that time she went to her 1st sleepover (which didn’t go very well, btw); and all the weekend services we’ve spent apart during church worship. These days, she goes to the park with her pals, rides her bike around the neighborhood, and calls me anytime she’s dealing with a BG issue she feels like she needs help with. I love that we have cell phone technology in this day and age of parenting — and diabetes management.

#3 – Finally, the peace of mind offered by her Dexcom Continuous Glucose Monitor (CGM) is second to none. Dexcom measures the interstitial glucose levels using a very thin sensor placed just beneath the skin. It displays a glucose reading every 5 minutes, along with an arrow to indicate which direction the glucose level is moving. We’ve found it to be incredibly accurate, and would consider it one of the most important tools in our tool box.

Currently, I’m able to remotely monitor my daughter’s Dexcom data using Nightscout. This means I can see her numbers on my laptop, smartphone, and even on my Pebble watch (using an Android app) no matter how far apart we are! Ten years ago, the idea of being able to remotely monitor my daughter’s glucose levels would have been a dream come true…and now here we are. {Nightscout is actually a bit more complicated to set up than I’m making it sound here, but it’s pretty amazing and worth the investment of time.}

If you are a family of iPhone users, the Dexcom SHARE might be a great option for you. There isn’t as much set up required as Nightscout, and you can still remotely monitor your child’s glucose levels. Unfortunately, Dexcom didn’t make their remote monitoring software available to Android users (something I have a pretty big problem with — a soapbox I’ll rant on another day), so I can’t give you a firsthand account of the experience, but I think it’s going pretty well for iPhone users who have been able to use it.

Finally, have hope in the technology of tomorrow. In the summer of 2014, my daughter wore a closed-loop artificial pancreas called the Bionic Pancreas. She wore it for five days as part of a clinical trial, and it completely controlled her glucose levels — like, she didn’t count carbs, she didn’t correct highs, she didn’t deal with lows. It. did. eve.ry.thing. I’m not even making this up, people. I know it sounds very futuristic-scifi-the-stuff-that-movies-are-made-of…but it was real. She really wore it. You can read more about her experience with the Bionic Pancreas HERE.

Oh, and Encapsulation. You need to be excited about that too…it’s a little implanted device that would eliminate the need for insulin for up to 24 months.

Yeah. Read that again: “eliminate the need for insulin for up to 24 months”.

Good stuff is coming.

Get on board with technology.

6) Get involved. You cannot take a passive role in your child’s future. You have a very finite amount of time to shape tomorrow, thereby ultimately making a long-term impact on your child’s destiny.

One day your child will grow up to become an adult with type 1 diabetes. Their ability to carry health insurance, avoid discrimination in the workplace, access technology (as well as what that technology will be), and the ability live as normal a life for as long as possible will come about, because of  advocacy efforts that are happening TODAY.

There are organizations working very hard to secure a better future for your child, but it’s not just about tomorrow. Children today are able to access insulin pumps and CGMs because of advocacy organizations who have worked hard with the FDA and insurance organizations. Our children can go to school with protection under the American with Disabilities Act, complete with a 504 Plan (or IEP, depending on your child’s needs). Today’s children are benefiting because of yesterday’s hard work. It’s a circle effect.

You must become part of the momentum, because we need ALL HANDS ON DECK. Get involved. Start a walk team. Sign up to share your story with lawmakers. Offer to come to the office. DO SOMETHING…but whatever you do, don’t do nothing.

JDRF

ADA

Here’s a great article that highlights some others.

7) There are no bad numbers.  There are a lot of numbers. Many days are like a roller coaster…up, down, up, down…but there are no “bad numbers”. There are high numbers. Low numbers. And target numbers.

Let’s say a BG of 439 pops up on the meter. What do you do?

Frown? Scowl? Grumble?

Does your child think you’re frowning, scowling, and grumbling at them? Are they now worried that they’ve disappointed their parent because of something they have absolutely no control over? Their body doesn’t make insulin. Regardless of whether that number is the result of forgetting to cover something or not calculating correctly, the fact remains that…well…they’re 439 because their body doesn’t make insulin.

Listen…the last thing you want is for your child to tie that number to their self-worth. It’s a number. It’s a piece of data — that’s all. 439 simply means your child needs insulin. Period.

Fix the number, then objectively try to figure where it came from. Don’t lash out. Don’t hurl accusations. Don’t place blame. Just work together to problem solve.

Each number — whether high, low, or target — is merely a point of data on a graph. There are no bad numbers — just data. Use the data to make decisions about what to do next, but do not use the data to place any sort of value on your child.

Your child is so much more than a number.

{By the same token, remember these numbers are not a measure of your parenting either. Data! That is all.}

8) Doctors often don’t get it. You will be surprised how many times you encounter a doctor (or other healthcare professional, nurses included) who will ask you if your child uses insulin. Um, yes. TYPE 1 DIABETES infers the use of insulin, but it’s just not that simple. They will insist your child needs nutritional counseling or start an exercise program to “control their diabetes”. They don’t get it. THEY JUST DON’T GET IT!!!!! And you can educate them until you’re blue in the face, but they will probably just argue with you.

Truthfully, I didn’t really get it either. I was a nurse for 10 years before my daughter was diagnosed, and nothing in nursing school prepared me for this. I was SHOCKED when I learned what this life would consist of. I’m embarrassed to admit this…but I said that…and this patient taught me so much.

I don’t know how to fix the problem at large, but felt you should know so you wouldn’t be caught off guard. Most healthcare professionals have no clue about T1D, so don’t let them start making decisions about your child’s insulin until you’re confident they know what they’re doing.

{Further reading: No one should die because they are misdiagnosed or not diagnosed in time.}

9) Get on a 1st name basis with your school nurse. And your school’s custodian. And the cafeteria workers. And the front office staff. And the crossing guard. And anyone else who is willing to look out for your child during the school day. Love these people. You are on the same team. It takes a village, and they will be there when you aren’t. Everyone matters.

10) Your child was diagnosed, but everyone in the family is living with type 1 diabetes. This is going to be life-changing for everyone. Siblings will go through adjustments. Marriages go through adjustments. Family routines go through adjustments. In some ways, a bomb has just been dropped in the middle of your living room.  In other ways, the ultimate team challenge has just been presented to your family.

Everyone’s experience counts. No one is less important, and there’s most certainly a job for everyone. Youngers can help keep track of juice boxes, and Olders can help learn how to give injections. From learning how to check glucose levels to learning how to count carbs to learning how to weigh and measure food, there’s something for everyone.

All of that being said, sometimes it won’t be so hunky dory. Sometimes siblings grow tired of the extra attention your child with diabetes (CWD) is getting. Sometimes your CWD may grow tired of it too.

After ten years, I wish I could end this post by telling you that it gets easier, but it doesn’t. Sometimes it feels like we’re living life one number at a time, just waiting for the next result so we can make a decision about what happens next.

The insurance hassles, prescription battles, and BG rollercoasters never seem far away. There’s always a challege lurking around the corner. Just when you think you’ve found the perfect insulin dosages, your child grows — or has a test — or exercises — or whatever. There are birthday parties, and sleepovers, and swimming pools, and bounce houses…and nothing is predictable.

It’s never easy…but you will look back and see how far you’ve come…at 2 weeks, then 4…then 3 months, 6…then before you know it, at 1 year, 5…10… You will stand amazed at what you, your child, and your family has overcome. You will look around, simultaneously shocked at how fast the time has flown, and how slow it has crept by at the same time.

No…it doesn’t get any easier.

YOU, my friend, get BETTER!

Got Guilt?

Today I was invited to blog over at D-Tales!

D Tales

Heidi is my friend.

No, I mean…like… 
I-know-her-in-real-life, 
we-get-together-for-lunch, 
we-love-to-do-potlucks, and 
our-kids-could-play-together-for-hours
friend.
She’s special to my Candy Heart.
She always has my back.
I heart Heidi 🙂

(And, by the way, 
she generously saves THE BEST bags of hand-me-downs 
that my girls always ADORE!)

So head on over.
I’m talking about guilt.
Ya…I have it.
But this isn’t about me.
I think you’ll agree that it’s time to wrangle this beast,
and say a few things that shouldn’t wait another minute.

By The Way…

In case I haven’t mentioned it before….
I LOVE COMMENTS!!!
Over the past week or so, I’ve gotten some awesome support of my new blogging adventure here.
I’ve received some encouraging e-mails.
I’ve felt loved by the DOC and other D Moms in a way I’ve never felt before.
Please feel free to say hello anytime.
Here’s a few of the many excerpts that have touched my (candy) heart:
You don’t know me personally, however I feel as if we have been friends forever from reading your blog.  It was because of you I was able to write my experience with diabetes, something I don’t think I ever faced until I wrote it.  Your blog gives me strength on days I don’t have much, it gives me hope on days when I have lost all hope, but most of all it makes me realize I am not alone out here as a diabetic mom.

I have read your blog a couple of times( hope you don’t mind) and just wanted to say thank you. You and your testimony and your blog posts have been an amazing encouragement to me the past several months. My husband is deployed to Afghanistan and we had just moved to Tennessee right before he left, I didn’t know many people, wasn’t really set up at a church and didn’t like driving to Nashville for diabetes care. While I still don’t like driving to or in Nashville all that much, everything else has changed and God is so good, always!

I must say, this is a first for me– I love the blogwarming party 🙂
Wendy, you are just THE best!!

I love reading your blog. It keeps me motivated and reminds me that I am not alone in this Diabetic World. LOVE YOUR BLOG.
Love your blog! Thank you for sharing and encouraging! 

In case you ever thought that I don’t read my comments….or that I don’t check my e-mail….PLEASE know that I do!
Your kind words motivate and inspire me beyond measure.

You see, if I tried to talk to you about our journey,  I’d probably start to cry.  My voice begins to quiver.  I feel the lump in my throat.  It’s just emotional for me.  What can I say?  I’m an emotional girl.
The truth is that I can’t talk about it.
But I can write it.

And so, to Candy Hearts Readers everywhere,
This is for you…

 

 Calling All Angels

I need a sign to let me know you’re here
All of these lines are being crossed over the atmosphere

I need to know that things are gonna look up
‘Cause I feel us drowning in a sea spilled from a cup

When there is no place safe and no safe place to put my head
When you feel the world shake from the words that are said

And I’m calling all angels
I’m calling all you angels

I won’t give up if you don’t give up
I won’t give up if you don’t give up
repeat….

I need a sign to let me know you’re here
‘Cause my TV set just keeps it all from being clear
I want a reason for the way things have to be
I need a hand to help build up some kind of hope inside of me

And I’m calling all angels
I’m calling all you angels

When children have to play inside so they don’t disappear
When private eyes solve marriage lies cause we don’t talk for years
And football teams are kissing Queens
and losing sight of having dreams
In a world that what we want is only what we want until it’s ours

I’m calling all angels
I’m calling all you angels 

Thank You.
From my CANDY HEART to yours,
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