what if….?? EMERGENCY strikes

 

As parents we pretty much always see worst case scenarios flash through our brains and try to eliminate disaster before it strikes…

It’s engrained in our thinking to protect our children – from anything and anyone who could cause them harm.

We pad edges of coffee tables and fireplace hearths, we puts gates on stairs, child locks on drawers and toilet seats when they are young… you name it we want to do anything and everything in our power to protect our children from an accident or god forbid worse…

As they get older – they get warnings when rough housing that “someone is going to get hurt” – we want to protect them from cyberbullies, we check ingredients, buy organic, wear mouth guards to protect their teeth – you name it…

 

We do what we can to protect them, shield them, prepare them to make smart choices, advocate for themselves, for their friends and be good members of society… 

 

D parents need to go so much further than that ..

We need to teach our children to keep themselves ALIVE, healthy and thriving..

We have to educate our children – teachers, coaches, family and friends…

 

We teach our kids about blood sugar numbers, high / low symptoms and how to treat them – how to calculate insulin dosages and inject themselves with it. How to adjust for exercise or stress and to carry supplies with them anywhere and everywhere they go – because WHAT IF ?? 

We HAVE to be PREPARED for the worst case scenario because it can and does happen…. Type 1 Diabetes is unpredictable – but you know what – SO IS LIFE….  You never know when an emergency might strike such as a HARD LOCKDOWN at school… meaning your kid is stranded where they are with zero communication and only what they have with them to survive.. 

Today the D community got a wake up call … I got a wake up call… unfortunately this is the day and age we live in – it happens and it is ONE MORE THING we need to be prepared for.. that I need to prepare Eden for just in case…

Here is the story as it unfolded, that I have been given permission from the mother to share – I am so grateful that everything turned out OK and I am sharing in an effort to help further educate .. A lockdown can turn into a very dangerous situation for our D kids – and it isn’t just because there is a crazy maniac on the loose…

This story will protect and save lives in the future – and I will be having Eden carry glucagon with her from here on out.

 

Initial post in T1D Support group this morning…. HUNDREDS of us were waiting, offering support and watching for updates… 

 

 

 

 

another D mom posted this picture as a piece of advice for other parents..

what is it? you might ask…

starburst – starburst, taped to the bottom of a desk in case of a hard lockdown during school hours..

Eden has supplies in every classroom – but it never dawned on me that she might be stuck UNDER her desk unable to move for hours on end in a hard lockdown scenario…

 

 

 

HOURS LATER we get this update…. 

 

SCARY?!?!

Our school medical plan states that in an emergency situation Eden will be taken care of… In a HARD LOCKDOWN this cannot happen…..

Her 12 year old son is clearly a CRAZY AMAZING KID …… and his parents deserve major kudos too… they were PREPARED – they PREPARED HIM –  and the most impressive thing – he was only diagnosed 7 months ago…

 

 

 

 

I will never give up…

 

So much with managing Type 1 Diabetes has to do with confidence…

Confidence, bravery, strength, resilience and determination.

 

image found on Pinterest

 

You need to be confident with every single decision you make – because quite literally – when dealing with T1D – a mistake can have life threatening consequences.

 

I feel like I have lost a bit of that confidence… T1D has beat me down this week.

D is making NO SENSE.. not that it ever really does..

But this week has been a roller coaster.

 

Perfect one day and then all hell broke loose.

No rhyme. No reason.

 

A combination of things are just wearing me down

• It’s the fact that my efforts at educating the public feels like it is falling on deaf ears
• It’s the fact that we are seeing and learning so many new things about Eden’s body
• It’s the fact that learning those things is adding stress to FIX them
• It’s the fact that Eden’s blood sugars have been wild and erratic and make NO SENSE
• It’s the fact that I’m trying my darndest to FIX them and I can’t
• It’s the fact that every now and then I have moments where I just want it to all GO AWAY but know that it won’t and that it will be in our lives FOREVER

 

I sat and watched Eden prepare her school lunch this morning..

something that she has been mostly doing herself for quite some time now.

I sat there and watched her get out the scale and weigh the food that she was planning on eating

I sat there and watched her check carb counts but not write them down

I sat there wondering if she was just going to “wing it” today or really care

I sat there wanting to nag her, remind her, bug her… but didn’t 

 

Not only do I need the confidence, bravery, strength, resilience and determination to get through the day.

EDEN does..

 

The thing is – she seems to HAVE these things – she gets up and fights another day without letting anything hold her back.

She has a confidence about her that is inspiring… she just gets on with it and moves forward.

• Eden doesn’t yet worry about her future
• She doesn’t let the “numbers” from her day affect her
• She doesn’t let T1D stress her out

 

I DO… I can’t help it.. 

It’s the mother – protector instinct within me. 

It is strong, powerful and impossible to shake.

 

I get up and look BACK – I think about all of the blips in the road from days prior or the sleepless night I just had and think how I can FIX them. How I can make things BETTER. How I can limit her body from experiencing long term complications. How I can tweak insulin settings, adjust timing, help her body function the best it possibly can.

 

Yes – I look back – but SO I can look forward.

 

I want the absolute best for my daughter. I want her healthy and to have a bright future.

Every day seems to pose a new challenge –

a new issue that wasn’t there yesterday.

It is exhausting and so frustrating –

trying to FIX something that really can’t be FIXED..

 

 

I am doing the best I can trying to wrangle a disease that just does not want wrangling.

I need to try to not beat myself up.

I may have lost some confidence this week..

But the fact is – I will never give up..

I am determined.. Nothing is Impossible.

Weirdly blue…

Today is World Diabetes Day..

I am all decked out in BLUE to spread awareness..

 

Blue hair, blue clothes, blue nails and the word HOPE written on my hand.. (even if it is upside down)

HOPE

HOPE that one day we will have a CURE

for this awful disease.

 

 

 

I am also feeling weirdly blue. Emotionally blue.. 😑

 

I woke up and started the day excited and more motivated than ever to spread the word today.

 

As the day has worn on – as I have seen picture after picture of children, teenagers, babies – entire families living the D life – I have become an emotional wreck. I cannot stop myself reading stories and feeling emotion for those families as well as my own. The show of support everyone is getting from loved ones, friends and family is overwhelming..

 

The D Community is AMAZING..

All of the D Moms, D Dads and D peeps out there doing their darndest to get anyone and everyone to stop and notice.

 

We are such a strong, brave and fearless group of people – united and bound together to fight..

to fight for the CURE we all so desperately want and need for our loved one.

 

 

We are a force to be reckoned with.

I have so many mixed emotions today

But for sure –

I am PROUD to be a D Mom

 

 

 

 

 

 

 

 

What if I told you …

 

What if I told you there was a disease that was on the rise

that no one knows why

that is incurable

that requires treatment for life

that hurts and is misunderstood

that the treatment keeping you alive can kill you

that ANYONE can get – young, old, fit or healthy

that YOU could get – your child, your sister, your best friend

that people with this disease get poked fun at, stereotyped and discriminated against

that creates a financial burden

that makes eating a chore

that you have to monitor all day every day

that can cause long term complications

that you can die in your sleep

 

 

That name of this disease was CANCER ?

 

Would you want to support your best friend, or sister or child if they had Cancer?

Would you want to find a CURE for Cancer ?

 

My bet – YES

 

What if I told you…

The ACTUAL name of the disease was

Type 1 Diabetes?

 

 

Would you support your friends or family then?? – or would you think it wasn’t as important?

Would you want a cure then?

 

 

A CURE is needed for Type 1 Diabetes – just as much as it is needed for Cancer and other well known diseases.

Just because Eden’s disease is called “Diabetes” does not mean we do not need or deserve support.

 

 

Please support our family

Join us in the JDRF Walk to Cure Diabetes

or better yet – DONATE today to help find a CURE

 

 

CLICK IMAGE

 

 

D in the Media …

So – you should all know by now that the purpose of my Blog is to spread Awareness about Type 1 Diabetes and help to educate..

 

T1D lives in our house – so you will read about how it affects OUR life and things that we do as a family to wrangle this disease..

 

Every person affected by this disease is different – every method we use may not be perfect for others.. It’s how we do things but is certainly not medical advice for others…

 

I am by no means an EXPERT in Type 1 Diabetes… in fact some days I am scratching my head wondering if I really know anything ?! I learn so much everyday by reading, reading and more reading… and of course – by trial and error.

 

I am certainly NOT AN EXPERT in the other types of “diabetes” ..

 

There are 3 main types :

 

Type 2 Diabetes

 

Type 1 Diabetes

 

Gestational Diabetes

 

There are also others… (see here for more information on all types of Diabetes)

 

LADA (latent auto-immune disease in adults) or Type 1.5 Diabetes

and MODY

 

The MOST COMMON type of Diabetes is TYPE 2 and is MOST OFTEN found associated with older age, obesity and a lack of physical activity.

 

Again – I am NO EXPERT in Type 2 Diabetes and know that NOT ALL persons affected by Type 2 diabetes follow the typical stereotype that you hear about and see in the media..

 

I had a stack of magazines laying around and I thought it would be interesting to flip through a couple of them and see what I could find on “diabetes” ..

 

This is what I found within 5 minutes and 2 magazines :

 

 

 

 

hmmm.. interesting – ONLY ONE specifies which TYPE of diabetes they are referring to..

 

Pretty EASY to see how the public THINKS that eating berries or bananas or okra or cinnamon will help to prevent, control or “cure” Eden’s Type 1 Diabetes.. It is SO FAR from the truth – but unfortunately this is the public perception – one in which the media does NOT do a good job to differentiate.

 

The next time you see something in the media – please stop and think for a moment about Eden and all the other T1D peeps out there who want their disease understood… If you look – it is EVERYWHERE and creating a lot of confusion and misconceptions – education IS the key… I will continue to do my part to help..

 

articles were found in the following magazines…  (1) and (2)

 

Learning a new Language..

As Eden’s “diaversary” approaches it makes me think back to the day almost 4 years ago when Eden was diagnosed with Type 1 Diabetes and we were thrust into a world of unknowns..

 

Even though I took Eden to the ER asking for her to be tested for T1D – I had NO IDEA what that meant or what our life would entail. Even when the blood glucose meter read “HI” – I still had no idea what that meant..

 

Thankfully I did know the symptoms so Eden was not at death’s door upon diagnosis, but other than that I was completely clueless!

 

 

Whilst Eden was in the hospital we were bombarded with SO MUCH information in those first couple of days I thought my head was going to explode. It was a HUGE learning curve and one we needed to learn FAST to care for our child and keep her alive.

 

Hypoglycemia

Hyperglycemia

DKA

Pancreas

Insulin – long acting and short acting

Sliding Scale

Glucose

Carbohydrate Counting

Blood Sugar readings

Ketones

Auto-immune

Glucagon

 

 

Every single thing we learned about was daunting …

 

I have to INJECT MY CHILD with insulin ??? EVERY DAY – multiple times a day ?!

 

 

What were all these things ?? And WHY were they all SO SCARY ..

 

We were sent home with a 300 page book on understanding Type 1 Diabetes – mountains of life-sustaining supplies and a broken heart.

 

We learned a new way of life that day – learned a new language that we now speak every day and it seems second nature. It took a LONG time to get comfortable with caring for Eden but we can never get too comfortable – or complacent.

• I will never forget the first time I had to draw insulin up out of the vial, measure a tiny dose and inject it into my daughter – my hands had never shaken so much.

• I will ever forget the nights watching her sleep and sobbing by her bed – scared to death to leave her side

• I will never forget the times we had to physically hold her down to test her blood sugar, give her a shot or force feed her sugar with her screaming and flailing

I will never forget these moments –

we have learned to live with them and thrive through this diagnosis but those memories will never fade.

 

Type One kids are amazing – as are their families and adults living with this disease

… It is a TOUGH TOUGH road to travel every day yet we do it because we have no other choice.

 

The day there is a CURE –

will undoubtedly be the BEST day of my life and I cannot wait for that day…

Good News VS Bad News

 

 

I RARELY watch the news on TV

why?

Because it is mostly BAD news and it’s depressing..

 

Unfortunately I get it.. Supply and demand – that’s what people apparently want to know about.

My Blog has sadly proven that too – I have had a handful of posts that are more in-your-face than others.. Not posted for dramatic effect or to get paid for likes or shares – but about the TRUTH living with an incurable disease. Those posts prove the numbers – 300-400-500-600 views for the more confronting reality versus 20-100 views for the majority of others.

When I started I honestly didn’t really care about how many followers or readers I got – I was doing it as a much needed outlet. That has evolved into a burning NEED for me to share our Type 1 Diabetes story and life in the hopes to spread awareness about a disease that infiltrates EVERY aspect of our lives every.single.day.

 

BAD NEWS SELLS – people watch – people “like” and “share” pictures with sad images of sick children with hopes and dreams they may not reach..

 

People don’t seem to be captivated unless there is something grim to report or a sad headline or picture to click and share.

 

It makes me sad – sad that we live in a world that feeds and thrives on the news about the unfortunate and people who are suffering – through illness, natural disaster or the like.

 

The truth is everyone suffers to a certain extent – everyone has a story to tell – some of us just don’t raise their voices to be heard or at times would rather be heard sharing the good news and triumphs versus the bad and ugly.

 

I WANT TO BE HEARD !

I WANT TYPE 1 DIABETES IN THE NEWS

 

Not necessarily for the bad, scary truth because it KILLS people and it sucks to live with.

But because it deserves to be there at the forefront of peoples thoughts just as much as cancer, heart disease, obesity, MS and other diseases.

 

EVERYONE knows how tragic and life changing cancer is – EVERYONE wants a cure for cancer and has been touched by it at some point throughout their life. People therefore are willing to raise and donate $$ to try to find a cure.

 

People in general don’t KNOW or UNDERSTAND Type 1 Diabetes and that it also has NO CURE and is LIFELONG.

 

Do I really need to jump on the bad news bandwagon if it means there is any chance of people helping me spread the word.. ?

 

Such a shame – I would love to be able to bask in the good news moments just as much as the bad. Because the truth is – Eden CAN live a full healthy life in spite of Type 1 Diabetes and that’s exactly what we plan on doing..

 

WHY Does my Mind ALWAYS go There…. ?

Eden is currently being a KID – she is out playing with the neighborhood kids at the park around the corner.. Something that she has only started doing recently. Not necessarily because she wasn’t allowed to, just that there weren’t really any kids around that she wanted to hang out with..

She has strict instructions to check in every 30 minutes. She has her medical kit with her and her phone..

WHY DO I KEEP LOOKING AT THE CLOCK ?!?!?!

Oh my gosh – I wish she could  just go and run around and have fun without my mind CONSTANTLY worrying about what could happen….

Is it just the mother in me – or the T1D mother ??

I think as mothers we ALWAYS think of the “worst case” scenarios …

• we pad the corners of tables just in case our young kids fall and bang their heads
• we lock up the medicine cabinet
• we yell out “SOMEONE is going to get HURT” when the kids are rough housing
• we worry when they are jumping in the pool that they are too close to the edge
• we worry, we worry, we worry….

we ALWAYS worry – but NOW I have additional worries…. 

• HOW much is she actually running around out there???
• Is she going to have a low blood sugar episode?
• Is she going to listen to her body and stop to check her blood sugar??
• Would her friends have ANY idea what to do??
• Would they come and get me??

I wish for ONE DAY – we could be totally, completely and utterly carefree…

More than that – I WISH FOR A CURE….. we REALLY need a CURE

Education is the Key…

I recently wrote this on the Eden’s Effort Facebook Page (which you can “like” here) but felt it was worthy of a Blog post..

I am going to say it again because I see and feel the frustration T1D families deal with constantly.. When people say these things to us it is just another stab in the heart – unless you are living it you truly have NO IDEA the impact of these words.

Type 1 Diabetes has NO CURE.

We cannot cure our children by not feeding them sugar

We cannot cure them with cinnamon or okra

We cannot cure them with more exercise

We cannot just give them “medicine” and sit back and relax

We DID NOT cause this for our children and neither did THEY

There will be NO CURE until the public is more AWARE and EDUCATED about what Type 1 Diabetes REALLY is..

AWARENESS and EDUCATION means doctors and researchers will get more funds to FIND A CURE.

Come on people – PLEASE help me spread awareness…

You might not only help in finding a cure – but save a LIFE too