Its complex, never-ending, life changing, 24/7, relentless

NOVEMBER 14th...

 is National Diabetes Day

3 years ago in June,
our sweet grandson Carson was Diagnosed with Type 1 Diabetes.
he had just turned 4 years old.

It's a day forever etched in my soul...

 There are things I saw and words I heard that day that I wish could be erase from my mind. 

It's weird how some things stay in my head and often bring me to tears as I think back to that day. 

Type 1 Diabetes is a complex, never-ending, life changing, 24/7, relentless autoimmune disease.

It happens when a persons own immune system attacks and destroys the

 insulin-producing beta cells of the pancreas, it is not completely clear what triggers it.

There is no cure...yet

Can't prevent it
Can't reverse it
Don't outgrow it
Not caused by a poor diet or too much sugar.

Being a nurse you would think I knew all about this horrid disease, nope!

About all I knew is some of the symptoms of diabetes like excess thirst and urination.

How naive I was, little did I know the complexity of each day in the life of a TYPE 1 Diabetic.

When Carson was diagnosed, it got real close to home for me and Rick. 

We jumped on board, we read books to learn all we could, we learned from his parents and eventually began having him at our house, managing his blood sugars the best we could, always with the support of Brianna & Chris. We are grateful for the trust they have in us  

 Best buddies

You can see the pod on Carsons Left upper arm. This little contraption, continuously monitors Carson's blood sugars and transmits the number to his mom & dad's phones. If his numbers get high or low, alarms will sound on their phones to let them know. This is also how the school nurse is able to watch him closely throughout the day. 

 He melts my heart.

Carson also wears another pod-like devise that is actually an insulin pump. It gives a constant trickle of insulin called his basal rate. When ever Carson eats or his blood sugars are high, he is given a bolus of insulin, using a device called a PDM. By entering blood sugar readings and Carbohydrates it computes the dosage and administers it through his pump.

This Boy.... and his Grandpa.

Type 1 Diabetes is not for the faint of heart and there is much to know,
it can be challenging, unpredictable, frustrating, exhausting and scary.
Carson is a strong, brave, resilient little boy.

Chris and Brianna are amazing!!!
Never underestimate the strength of a parent with a child who has diabetes

Carson is so lucky to have a big sister that likes sharing life with him and
 has much love and concern for him.

Type 1 Diabetes is just hard, but there is also much to be thankful for....

Psalm 106:1 says,

 "Give thanks to the Lord for He is good, His love endures forever"

We are thankful for a God who is real,
who loves Carson more than any of us
and who knows our pain.

We are thankful for...
Synthetic insulin
Pumps and glucose monitors
technology that helps manage the day and Research.
We are thankful for our Hero Carson, his mom & dad, his sister and the
 "Village" that surrounds them.

Carson is a healthy happy, well adjusted little boy, he is full of energy, charm and silliness. He is active in sports, he's a good student, he's kind and fun and he doest complain much about anything.
He is handsome, witty, smart and the bravest boy I know.

This is what Type 1 Diabetes looks like

I will never stop praying for a cure or better yet a miracle
Love you Carson

Bringing awareness in November.... Someone I know has Type 1 Diabetes

 November is National Diabetes Awareness Month

My hope is that other's will read this post and learn a few thing to better educate yourselves 

about a disease that is all around us.

"Oh, you have Diabetes"?

"So you cant have sugar or candy or cake", or or or...

"its because you ate too many sweets when you were younger, right?"

Sigh.... WRONG!!!

 

Sugar-Free jello jugglers from "lego" molds, that my daughter made for Carson's 6th birthday party.

Sugar-free YES, but NOT Carbohydrate-free. Carbohydrates break down into simple sugars, which are absorbed into the bloodstream. As the sugar level rises, insulin is released from the pancreas.

In Type 1 Diabetes there's no insulin to let glucose into the cells, so sugar builds up in your bloodstream. This can cause life threatening complications. 

The exact cause of T1D is unknown, It is classified as an auto immune disease, which means the body's own immune system mistakenly destroys the insulin-producing cells in the pancreas.

  Type 1 diabetics are insulin dependent, and there is nothing that they have done to cause it, 

and as of now... there is no cure.

Type 2 diabetes is a different kind of monster, it is a Metabolic disorder where the body produces insulin, just not enough and is often coupled with insulin resistance and impaired carbohydrate metabolism. Type 2 is a metabolic disorder often coupled with other comorbidities, such as obesity, hypertension and inactivity.

There is NO "good" or "bad" diabetes... to be blunt, both suck!

I do not pretend to be a leading expert on Diabetes nor do I know everything about this horrific disease. BUT... I do know that my sweet Grandson Carson has Type 1 diabetes, and that's a big deal.

 This is what stays with Carson or is at least nearby

*The black emergency bag

*Omnipod, cordless gadget that bolus's insulin

*Phone for blood sugar readings that Dexcom (blood glucose meter) transmits the readings to.

Sometimes I see a message like this, it's just a quick text message to Chris or Brie

 to ask if I need to do something. (still leaning)

I have tried to educate myself so that I can understand better what it means to have Type 1 Diabetes, so that I can understand what Carson has to go through EVERY~SINGLE~DAY along with his amazing Mom, Dad and sister.

 Life jackets....check, 

Juice....check

Got to be prepared, even on the boat.

Our brave little swimmer.

This is what Type 1 diabetes looks like....

eating a s'more like every other kids, blue eyes, a super hero lover and the cutest little guy ever.

 The crazy thing is, these little ones with T1D look like everyone else. 

The thing you don't see is the battle going on inside.

He is a Hero for sure! 

Having a child with T1 Diabetes is a full time job, just ask any Type 1 parent.  

Managing blood sugars in a little one can be exhausting, just ask a Type 1 parent. 

So many variables affect blood sugar in these little people,

Emotions, food, activity, temperatures,  pain, illness (even a sniffle), just to name a few.

The same food, same time, same amount one day can act totally different 24 hours later. 

The highs and lows are relentless....one minute chasing a low with juice and then a few hours later needing a bolus of insulin to get a high to come back down. 

There is no science,  

It's just the knowledge we've been given, some intuition, experience along the journey 

and lots of prayer. 

 This is one of Carsons Type 1 friends, they are both sporting Dexcoms on their arms, this little gadget takes blood sugar reading from the fluid in their arms and transmits it to a phone, Carson's parents can always see what his "sugar" is.

 100 is a great number  :)

Carson also wears a 2nd device which is similar in size, that's his pump.
 There is a predetermined amount of insulin that goes into Carson at all times, it's called a "basal rate" . When Carson eats food that has carbs in it, he gets extra insulin called a bolus.
So.... since Carsons pancreas doesn't produce insulin,
he needs a bolus every time he eats food that contains carbohydrates.

Carson enjoys Soccer and baseball, when he's super active his blood sugar tend to go down, so then he may need a juice, which is actually pretty great when you're tired sweaty and hot.

Nothing will stop this child, he is smart, happy, funny and awesome in every way.
I  hope you have learned a thing or two about Type 1 Diabetes.
I have only touched on a little bit, there is so much more to this crazy disease that I haven't even talked about.
Rick and I will continue to support Carson, along with Chris, Brianna and Audrey.
We are the alternates when Chris and Brianna go on a rare date.
As you can imagine he cant be left with just anyone.

We love him so much, he brings us joy and teaches us that
the little things in life really don't matter that much.

I will never cease to pray for a miracle in this fight for a cure!
But until then we pray for Gods protection over this little one,
he is so loved and well cared for by his amazing Mom & Dad....

We are so thankful for the team that they are working together for the love of their son.

From the outside you would never know...

Disease is such an ugly word, 

"Disease" doesn't fit for diabetes.

Diabetes is more of a life style with out a choice!

2 years ago today our sweet Grandson Carson, had just turned 4

We were on a family vacation in the Northwoods of Minnesota (about 280 miles from home)

 Carson just wasn't himself.

He was moody, clingy to his momma, overly thirsty and hungry, he was looked "lean" as we called it then but hind-sight tells he had slowly been loosing weight.

I hate to re-live this day as it brings quiet sobs deep within me.

It still breaks my heart as I sit right now at our cabin and remember

 this day two years ago, the morning of June 28th 2016. 

It's the day Carson's diabetes showed it's ugly face.
I write about it to remind myself of God's grace and mercies that are new every morning!
 He has continued to walk along side the Lewis family as they have taken this bull by the horns. 

It was not a huge surprise as Carson's mamma Brianna and I are both nurses,

 but when you take that role away and insert mom & grandma, you want to maybe pretend

 that it's probably just "something else" (but you know better)

That morning after a big pancake breakfast with lots of yummy syrup, Carson started complaining of a headache, and within minutes was throwing up, and then he started to become lethargic...

We both knew he needed his blood sugar checked, so off we went to the hospital.

It was in the tiny ER of Park Rapids, MN that the news was delivered to my daughter and I.

 I remember thinking it didnt seem very compassionate, in a matter-of-fact kind of way

 the Doctor said, "I think you already know, your son has new-onset type 1 diabetes"

It was as this moment that Carson's life changed forever, 

along with his Mom & Dad and sister.

Carson's life may have changed forever, but he and his family have adapted well, it's quite amazing to see Brianna and Chris work as a team to manage this little boys ever-changing blood sugars.

 This is what a person with an invisible illness looks like.

From the outside you would never know......

You see a perfect little boy with a cherub face... but you don't see the life saving insulin that is being injected by a pump that is attached to his arm or leg, or the Continuous glucose monitor

 that is attached to the other arm or leg, to send continuous blood sugar readings
  to mom and dad's phones.

You see a smiling face... but you don't see the look on his face when his blood sugars are either too high or too low, or when he's sad because he may not be able to eat what everyone else is eating.

You don't see the low blood sugars... the nights his mom and dad hear his alarm and go down to his bedroom to wake him up so he can drink some juice, to get his sugar back up. 

You see someone alive and well... but you don't see all the battles and obstacles he has to overcome to stay alive.... every single day!

We thank God every day for Carson and the amazing boy he is.

Diabetes does not define who Carson is...
 it is always there, it's a nuisance, and it is a challenge, but Carson is bigger than diabetes....
He's happy, strong, brave, smart and a joy in every way. 

He goes about his day just like every other 6 year old, playing with friends, swimming, playing video games, and building lego sets that are well about his age group... did I mention he was smart?

This boy is my hero, my joy....

Can you tell me were making cookies

Type 1 Diabetes doesn't happen overnight...
Something (it's not know what) caused Carson's own body to attack the cells in his pancreas that produce insulin, it's an autoimmune issue, it could have been slowly happening
for some time before he got really sick.

He and Grandpa are like two peas in a pod

Favorite photo of all time!

Did I mention the most important people in Carsons life...

 Carsons's parents are relentless, 

they are an amazing team full of knowledge and love for their son.

They keep Carson safe and healthy and he knows it.

Diabetes is 24/7 ! There are no breaks, no shutting it off, no vacations from it. 

You cant go awhere without planning...

What if the pump fails ( bring extra pods)

Dont forget to bring back-up insulin (has to stay in a cool place)

bring snacks incase his sugar gets low.

Emergency bag with glucagon injection in case he get WAY TO LOW.

Brianna and Chris you are awesome,
Carson (and Audrey) are so lucky to have you as their parents.

Speaking of Audrey....

 She is in this as well and has been a great encourager to Carson.

I'm glad they have each other!

This was one day a few months ago when we had Carson. He is showing that his blood sugar is 100, that's considered a "unicorn" in diabetes lingo. 

Not sure why it's called a "unicorn", but I do know that 100 is a great blood sugar level.

Brianna and Chris have taught us and trusted us with this precious one.

There is so much to learn sooooo much to take into consideration when managing diabetes. 

It can be overwhelming, but he is so worth it!!!

We will continue to learn and support this beautiful family.

A little teaching moment for those who don't know.....

There are two kinds of Diabetes....Carson has Type 1...

Type 1 diabetes is different from Type 2

It's an autoimmune disease, there's nothing that could have been done to prevent it,
 that's what makes it so frustrating..... UGH! 

I continue to pray every day for Carson, that God will watch over him and keep him safe,
 I believe in Miracles, I pray a miracle for Carson, but if that's not Gods will then I will
continue to pray for a cure....  Type 1 Diabetes needs to go away!

I trust that Carson will continue to grow and thrive.
He is an amazing little boy whom is loved by so many!

A reminder that I have etched I'm my heart...
Turn your worry into worship and watch God turn the battles into blessings.

96 years ago today.....

This day has great significance to me, 

but it's not about me,

 it's more about my precious grandson Carson who has Type 1 diabetes.

But imagine this days significance for 14 year old Leonard Thompson and his family.

 96 years ago today young Leonard was the first person to receive an insulin injection.

I won't lie... I hate that this even has to be a special day for our family, BUT...

 I'm forever grateful for the two men who cared enough to discover this liquid gold. 

Without the discovery of synthetic insulin, type 1 diabetics would die, as they did many years ago.

The early stages of treatment was a diet low in carbohydrates and high in fat and protein, 

this diet allowed Type 1 diabetes to live about a year. 

Diet  cannot save a Type 1 Diabetic. 

Unfortunately it's an autoimmune disease in which the body decides to attack the
insulin producing cells in the pancreas.... the pancreas stops producing insulin.

The harsh reality is that we need insulin to live!

 Because of the two men (featured in the article above), todays Type 1 diabetics 

can live a long happy, healthy life!

It's not an easy life. 

Managing the blood sugars of and active, growing, little one is challenging to say the least! 

For the parents... it's a full time job act of love!

 and as his grandparents we are committed to share in the challenge for a little boy who we love so much! We are thankful that his mom & dad trust us with him! 

My heart!!!

Still praying for a miracle cure for this dreadful disease

A special "Community Service Project"

My daughter has been doing some home schooling with Carson this year. 

He has a summer birthday and one more year at home with momma is always a good thing!

His 1st field trip to my house involved making apple pies.

Today we had another grandma field trip which I decided would include a 

 Community Service Project.

The community which may at first seem selfish to my readers involved a community of 7 people.... Carson's family, Rick and I, and Uncle Gavin

Let me explain.....

Carson mom (my daughter) Brianna, worked 13 hours Saturday night, had 8 hours of sleep then went back to work another 12hours, which got her to this morning. She then went home, got Audrey ready for school and Carson ready for Grandma's house so that she could not sleep mind you, but go directly to Audrey field trip a Quarry hill. Yes, that's my daughter she worked all night, came home and won't sleep until later tonight, knowing her... probably not until midnight or after.

So back to the Community Service Project.

I thought it would be fun to surprise Brianna with dinner for tonight, so I incorporated a little teaching session on serving others during my time with Carson. We decided that it would give mama a night off from thinking about what to make for dinner. 

And the other half of the meal stays with us and we invite Gavin to dinner WIN/WIN

The best part was Carson and I spending time together, cooking.

 Seriously other than me browning the hamburger and helping with measurements, 

he made the pizza burger mix by himself!

That's not all

 Then it was on to making Chocolate chip cookies....

For dessert  :) 

 Of course there were a few small nibbles .

I made the home-made Chip dip and we sent a bag of chips to go with the Pizza Burgers.

On a side note, I put together a list of all the Carbohydrates in the meal 

so Brianna didn't even have to do that. 

It was more just practice for me since Brianna and Chris are wizards when

 it comes to calculating carbs.

November is National Diabetes Awareness Month, 

Since Carson's Pancreas doesn't work, (he is a Type 1 Diabetic),  

all the carbohydrates he consumes have to be covered with synthetic insulin. 

Something that we who have functioning Pancreas's take for granted. 

What's on your bedside table?

Not a typical looking bedside table for most, 

but as the grandma of a Type 1 diabetic, these things are essential to keeping  Carson safe.

Saturday night Carson had his first sleep over since being diagnosed 1 year and 3 months ago.

His excitement made me want to cry as we watched him jump up and down on our driveway as his mama was getting his suitcase out of the trunk. It made me wondered why we had waited so long. 

I guess just the uncertainty of his nights, Carson has many nights that he has to be woken up and given juice to get his blood sugars back to a safe range, but with his blood glucose monitor and pump it is a little more controlled and easier to keep and eye on. So it was time!

One of the cool things is that Carson's parents can also see what his sugars are doing, as those numbers transmit to their phones. So Brianna and I were messaging each other off and on into the early morning. We are both night owls so it works for both of us...

Thanks for trusting us Brianna and Chris.

The iPhone on the far Right keeps a continuous reading of Carson's blood sugar. The reading is transmitted by a device that is attached on Carson's arm, 

it's called a CGM, continuous glucose monitor. 

The black monitor in the middle is used to control the amount of insulin that is going into Carson. There is a basal rate that is a fast acting insulin which automatically infuses every few minutes at a steady rate that is somehow determined by Carson's mom & dad.

It is also used to give larger amounts of insulin to cover the

 Carbohydrates that Carson consumes when he eats.

This is a detailed operation folks, so much to consider all the time, every minute, every day, without ceasing. My Daughter and son-in-law amaze me by the way they figure what to do next when Carson's sugar are falling at a rapid rate, or climbing at a rapid rate, they are a team, they do their best, and Carson is lucky to have these two amazing parents who are on high-alert 24/7.

just a few thoughts....

When to give the bolus, depending on where is Blood sugars are and what he's about to eat.

Should we correct the "low" or just suspend the basal rate, or put it at 50%, or give a juice and suspend the pump, or or or or.......

and why in the world is he "high", there is mostly no rhyme or reason for these high's and lows.

Here are some notes I made for myself one day while I was with Carson.

This was a day when Carson was  having a lot of "lows".

Finger poker, test strips, fruit snacks to treat this lows.... I decided to only give him 1/2 the package which equaled 1/2 carb, it was a good guess as he corrected and went a bit higher then I would have like, but that's just it.... most times it's a guessing game.

Another day, more notes for myself

counting up the carbs for dinner. 

 This beautiful little boy is so  much more that the disease that has attacked his pancreas.

He is Carson! 

Brave and strong. A little boy who is happy, enjoys life and has boundless energy. 

He loves to play with friends, loves to learn and so smart!

He is our hero!

We are looking forward to many more sleepovers with this sweet grandson of ours...

and we cant forget about our other grands, 

we had such a fun time with these three! 

Cant wait for little Lewin to join the fun, it won't be long  :)

When anguish falls in your lap...

This is not a post of complaint or of whoa-is me, but a post that comes form the heart of grieving grandma, grief is not only for times of death, it also strikes in times of tragedy and illness and when what was normal is taken away and replaced with something that is scary, confusing
and may never go away.... and it involves someone who is part of my heart.

1 year old today my Grandson's life changed forever.

Last year several weeks after diagnosis.
That life change trickled down to his parents, sister, and extended family.
Type 1 diabetes happens to innocence, and there is nothing you can do to
 prevent it or heal it, although
I do believe in a God of miracles and I'm hopeful for
a cure through the research being done for T1 diabetes.
* * * * * * * *
Afflictions and heartbreaks are different for Everyone.
When all seems hopeless, when anguish falls in your lap, what's left?

One year ago in a small ER in Northern Minnesota....

When struck with sudden tragedy... anger, anxiety, sadness and disbelief settle in around and a storm begins to brew. It's a slow moving storm, the kind that rumbles intermittently in the background.
That sound is fading and peace is starting to work its way back into my soul.
It's been a year since his diagnosis, but I'm still caught off guard when panic sneaks up on me and
out of no where comes a sudden audible gasp followed by sobs of heartache?
I find myself asking why? "Why did sweet little Carson get such a horrible disease"?
After all, I've been praying since before he was born for God to keep him safe and
 protect him from horrible accidents and diseases!
Yes, those have always been my exact words,
 I prayed this everyday for all my grandchildren.

I know it's ok to ask God why? He wants us to come to Him with our questions,
but I quickly ask God for something else,
 "Please Lord, remove the power of darkness from my surroundings because
 I believe he (the evil one) is stirring up my delicate grandma heart
and causing me to question your goodness".
As I pray calmness settles in and the sobs become praise in knowing that God is good.
 I have some work to do, but I'm getting there.
At first, when I was so angry, my questions was, "well now what do I pray for"?
I'm afraid to pray... the very thing I prayed not to happen... happened, ugh!
But as my senses start to come back to me I am reminded that
God did not promise a trouble-free life here on earth,
but He promises to be with us through our heartache.
He is right beside us, reminding us that He loves us and will never leave us, and I know
most of all he loves Carson.

For several months I was afraid to pray for my grand babies,
or to ask God for much of any thing, but over time I have changed my tune.
Something changed as the Holy Spirit began to patch my grandma heart. I now speak prayers of thanksgiving more so than prayers of "here's what you can do God"

As I've learned more about the awful effects that Type1 Diabetes can have on the
  human body, I now thank God that Carson ONLY has Diabetes,
sounds weird I know, but I am thankful that is all he has...
Type1 diabetes is an autoimmune disease that is sometimes accompanied by many other illnesses such as thyroid & Celiacs disease. We won't even talk about the havoc this disease can have on the major organs the body, ugh. Instead I thank the Lord that we have Carson, he is my hero!
He is such an amazing little boy that is happy and thriving!
But on that note, it remains a scary thing for him and that's a hard thing to see.
He doesn't like it, he knows he has it, but he's barely 5 and easily distractible.
This little boy has had to endure pain from multiple pokes, feeling yucky from highs and lows and has legitimate worries about pumps things attached to him.
It's all very scary, especially for a little one!

His mamma, changing pump settings on a particularly "low day".
Despite Type 1 diabetes, and all that goes with it....
 Carson is a perfect boy in every way!

He is blessed to have a sweet momma and daddy to reassured him, care for him and face this heartache head on. This is a relentless disease but Chris and Brie are diligent in doing what is best for Carson and I love them for that.  I am thankful for Caron's family, he has the best mom, dad and sister, and we feel blessed to live close enough to be part of this little guys life. Rick and I are grateful that Brianna & Chris trust us to keep him with us for hours at a time. We are reading and learning about Type 1 diabetes, there's a lot to know and try and understand.

We are on our 2nd book, Think like a Pancreas by Gary Scheiner who is a Type1 diabetic himself.

This last year has been a rollercoaster for sure...just ask Carson and his parents!
Never in my life did I think I would have to ever poke my grandbabies fingers to get blood to check his glucose level, but he makes it easier when he says, "It didn't even hurt Grandma".
He is so brave, and so strong and so wonderful,
Carson is our hero, and I will never stop praying for
God's grace and peace over this sweet boy and his family.

 I thank God daily for His patience with me as I still try to make sense of all this.
When I start to tumble, and that audible sob slips from the back of my throat, I let it come, but only for a moment as I quickly direct my thoughts to my stronghold and feel His peace again...
It's then that I'm reminded of His love and promises,
Thank you Lord for this beautiful gift, our amazing grandson,
Sweet Carson!

God will do great things with this little boy,

 "and we know that in all things God works for the good of those who love Him"

Romans 8:28

So thankful for this little guy and all that he is teaching me through it all.

God is good in all Days!
He is the Lord of misery and the Lord of celebration, and He uses both to accomplish His will.
In all eternity this life is but a split second, but if even for a second,
I thank God for all that He is and all that He has done and will continue to do for us.
Dear Lord, help me to trust you until the time when I can see from your perspective.

God is good....all the time.