D Blog Week, Day 7: My boys' thoughts

The final prompt this week: Back by popular demand, let's revisit this prompt from last year! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?

My brain is shot.  It’s late Sunday night and my creativity is in the toilet…but I didn’t want to leave my last day of D Blog Week hanging.  So I grabbed the D Blog Week wild card and asked the boys what was the best “diabetes invention” they could think of.  They didn’t even need time to think about it.  Below are their immediate responses. 

L, age 9:  “The best diabetes invention would be a cure.  Diabetes is a lot of work.  Work.  Work. Work.  Day and night.  I never get time to stop working.  It never ends.  I mean, you’ll never know what it’s like.  (Me:  Don’t you think I have a little idea of what you go through?)  Maybe a little, but until you have shots, and constant pricks, you won’t ever really know.  Just people who have diabetes know what it’s like.  Until you have black dots all over your fingertips, you won’t know.  Until you have shots in your belly and your butt, all the time?  You won’t know for real.  Sure you have a little idea.  But sometimes I just want a break.  Like.  One day off, not to have to think about diabetes.  It’s just so much WORK!”

Whoa.  I wasn’t expecting the lecture.  But A-flippen-men, little dude.

B, age 11:  “I would invent a pump that would be a mixture of a monitor and a pump.  It would check my sugar and give me insulin without me doing anything.  I would be okay with set changes every three days if it did all that for me.  And it wouldn’t take years to change it.  They would improve the new pump/monitor every week.  Every week it would work better…awesomer.” 

I’ve never spoke to him about the artificial pancreas.  I think he’s spot on.  Although I doubt the updates will be so forthcoming, I do appreciate the idea of constant improvement.

J, age 15:  “Other than a real cure…A pump that tests your sugar for you, and gives you insulin for you.  Corrects you automatically.  It’s implanted, so there are no pump changes.  It does it all.”

After these responses I felt obligated to show them some YouTube videos about the artificial pancreas.  I said I know someone’s daughter who will be trying it out at the end of summer, and then I told them it definitely won’t be soon…but someday this may be their reality. 

Their response?  J: “How much?”  B: “Can we bribe someone to let us try it?”  L: “Mom, you’re famous on Facebook or something…someone’s gotta let us try it.” 

And now their wait begins.  Which makes the wait for me, all the more harder.

D Blog Week, Day 6: A poem

Today: This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy.

To my boys:

Diabetes is a part of you

In soft slumber takes a piecing

Of your life, and of your thoughts

The numbers never ceasing.

And although I am not diagnosed

Nor live with shots and pricks

I’m knee deep in your reality

My soul endures the nicks.

My heart aches with every number

My brain speeds with every treat

I walk and breathe and think your world

The love cannot deplete.

I’m happy to take on the task

Your parent I’ll forever be

But one day you will leave my nest

My midnight checks will flee.

So let me take the worry now

Dear boy I’m happy to

I’ll give it to you all one day

Though my heart will be ever true.

I’ll always fret about you

I’ll always have you check in

You won’t have to fight the war alone

Each battle we will win.

My body’s not immersed in this disease

I’m on the other side

But every bit of my being

Tries to find a way inside.

My boys, you are my heroes

I am your biggest fan

Through all that life throws our way

Just keep in mind, “You can!”

D Blog Week, Day 5: Cure all the diseases!

Today's topic was this little nugget:  Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? 

I really thought about this.  I was a bit disturbed by the question to be honest.  How could I ever say I choose one disease over another?  But the question lingered in my mind after I read it, and I ended up chewing on it all afternoon.  The only disease that popped into my mind that I would even remotely give way to, is Gingivitis.  But then I thought there is probably a Gingivitis sufferer out there that is having a rough go of it and might give me a hard time in the comments.

“Do you have any idea what I go through?  I can’t have citrus, ever.  How would you like to be talking to a cute guy and your gums start bleeding all over the place?  I need surgery.  Do you have any idea how painful gum surgery is?!” 

Also, do yourself a favor and don’t Google pictures of gingivitis. 

Obviously, I don’t know enough about gingivitis to really “choose” it as our new go to disease.

Seriously though, this question makes me mental.  Like the old adage says, “If we threw all our problems into the pile, we would take our own problems back.”

I do want to address the second half of the question, though.  Living Our Diabetic Life and connecting with others online has absolutely made me more cognizant of other diseases and the trials that rest upon the shoulders of those that live with them.

We have a lot in common with other diseases.

*  The word “chronic”  *

*  The worry  *

*  The insurance woes  *

*  The hospital visits, the labs  *

*  The promise of cures in 10 years time  *

*  Hopeful research  *

*  Caregiver concerns  *

*  The disruption of regular life  *

*  Discrimination  *

*  Misdiagnosis from doctors  *

*  Misunderstandings from the media  *

*  Jumping to conclusions by the general population  *

*  Advocacy  *

*  Online networks  *

The list goes on and on.

Comparing diseases is fruitless.  Asking us to choose a different one is asinine.  Behind every disease is hurt.  We all deal with the same core issues, why must we ever be asked to say, “This disease is easier/harder than that one.”  And my apologies to those suffering from Gingivitis.  I know it really isn't funny.

All diseases are suckage.

 And that’s all I have to say about that.

D Blog Week, Day 4: I did that!

Today't topic:  We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small.

What have I done that lends itself to tooting my own horn?

I’ve sent boys with Diabetes to scout camps, church camps and school camps.  That is huge.

I’ve let boys with Diabetes sleep over at a friend’s house, complete with ice cream and chocolate chip pancakes for breakfast.

I learned to fill a reservoir without any bubbles inside, and I’ve learned how to put on a set properly.  “Look Ma!  No kinks!”

I’ve fought for 504 accommodations, and I’ve felt the sting of a teacher say, “You need to fix those numbers.”  And I survived.

I’ve kicked the bahookie out of large ketones.  In fact I’ve collected urine ketone data from a child in diapers.   Yeah, I’m pretty awesome like that.

But all of it pales in comparison to “MY” greatest diabetes accomplishment.  (Because I’m going to take some time to be all selfish here and pretend it’s all about me today…)

My greatest accomplishment, diabetes wise?

You’re looking at it.

This blog.

It has opened more doors, blossomed more friendships, gotten me through more nights, answered more questions and provided more happiness than I can convey in this moment.

Starting this blog was the best thing I have ever done to bring myself out of the fog of worry that settled so readily after 3 diagnoses.

To quote myself: 

“I like to think of my blog as my ark.

I was drowning, so one day I took my thoughts and built my ark/blog.

I filled the ark with my hopes, my fears, my belly laughs, and musings from my swelly brain and let it sail.

It traveled father than I ever imagined, and has taken me to places I never knew existed.

The best place of all is the DOC. When I started this blog, I didn't even know the DOC existed. It was a happy coincidence my sister in law found another parent blogger and pointed me in her direction. Discovering the DOC was akin to finding the new world for me. I had found solid ground. I wasn't alone in the ark with my thoughts, like Noah's dove, I was able to set them free...and in turn, I could set myself free as well.”

This is my outlet.  I give it words, and in return it gives me peace of mind.  I hope one day my children will be able to read these words and know that I tried my best, hoped my best, and loved my best.

I hope they know that writing out our story gave them a healthier mom…and along the way maybe even helped a person or two with their own journey.

My greatest accomplishment in a nutshell is you, dear readers.  I built this home and you found your way to my doormat.

Welcome.  Come in.  Sit down.  And by all means, put your feet up.  

No need to use a coaster either…Our Diabetic Life is inherently messy.

D Blog Week, Day 3: The day it turned around

Our prompt for Day 3: Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. 

I was crying.

In my bed folded up like an origami turtle, my thumb and forefinger on my forehead, my palm pressed against my right eye trying to dam up the unlimited resource of salt water falling from my tear ducts.

I cried silently.  My personal symphony of misery.  It was my time to soak in all the sadness, and belt out the chords of pity inside my mind.  Pity for myself, my children and my family.

We now had three children with Type 1 Diabetes, and even though it had been six months since this reality took center stage, I still hadn’t come to terms with it.  I fought back against the acceptance of it all.  How could I accept something so terrible? 

I was sure it was too much.

I was sure it wasn’t fair.

I was sure God hated me.  In fact, I had stopped praying months before.  I knew God wouldn’t take away Type 1 Diabetes just for me, and right now that is the only prayer that sat in my soul.  So why go through he motions?  I was too angry to pray.

At the time my husband owned the bakery with his sister.  He was in bed hours before me, so I was sure that I wasn’t disrupting his deep sleep with the occasional sniff or cough that would burst through my muffled tears.

But Ryan was a good husband.  And Ryan was very aware.

I was in a deep depression and I wasn’t near as good at hiding it as I perceived. 

That night, as I whimpered quietly in the dark, just as I had countless nights before that, Ryan sat up in bed.

He turned on the light on his end table, slipped out of bed and walked over to my side.

He knelt in front of me.

“I’ve known for months now.  And I’ve known I had to talk to you about it for months.  I never knew what to say, because your feelings are valid.  I’m angry too.”

He stood up, and reached out his hand for mine.  I stood in front of him as he cupped his sweet hands around my cheeks…

“But I really believe my love, we weren’t sent to this earth to be miserable.  It’s about finding happiness within what we are given…God wants us to find joy.  We need to look at all the blessings in our life and celebrate our amazing boys.  There is so much good in our lives, I think we need to start focusing on that.  And I think you need to start praying again.  I know it will make you feel better.”  

He gently wiped away my tears and gave me a long, lingering bear hug.

He kissed me sweetly on the lips and went back to bed.  Snoring within seconds of his head hitting the pillow.

I knelt and prayed that night.  I sobbed for hours, spilling out all my heartache to the Lord.

And the next morning…I was ok.

Like a light being switched on, I was immediately transported to the other side of my grief. 

Sure, my boys’ diagnoses are some of the most memorable diabetes moments of my life.  But the day I learned to accept Our Diabetic Life is the day that glows brightest.

Thank you, Ryan for knowing what to say, and when to say it.  You saved me so many times… how will I ever repay you for making that moment such a poignant one?  I’ve played those words over and over again in my mind this past year.

“We weren’t sent to this earth to be miserable.”

“We need to find the blessings in our life, now.”

“We need to celebrate our amazing boys.”

I’m trying so hard to find the joy.  I pray for it every night. 

I’m trying for you. 

I’m trying for the boys. 

I’m trying for me.