The Hidden Truth

And,

Once again we are left with the raw, unsettling reality.

Sadness doesn't begin to describe ...

A heavy heart doesn't "cut it"...

A deep sigh isn't enough to even budge the weight...

Type 1 Diabetes took another young life last night. It could be any of us really. Any of us could be this grieving family today. This could be our reality. It is scary. It is sad. It is unthinkable.

I know I usually try to keep it "light" on BETA BUDDIES. I try to add a little comedy to our days and our sleepless nights. I know that I may offend some. Please understand that I am trying to make managing diabetes a little more bearable for us all. Because, no matter how much I "sugar coat" it, no matter how many "for fuck-sakes" are typed to be "muttered with exhalation", and no matter how simple I make it sound or how upbeat I try to be... this is the painful truth.

Type 1 diabetes is difficult, at best, to manage. It is not a beast to be "controlled". It can kill. The medication used to treat type 1 Diabetes is insulin. Insulin is a hormone. Insulin is deadly if too large of a dose is given. Insulin can cause seizures, coma, and even death. Insulin is the only treatment for type 1 diabetes. Without insulin, persons with type 1 diabetes would die.

Diabetes affects EVERY organ system in a persons body. These people look totally "normal" from the outside, while this disease wreaks havoc on their vasculature and organs.

Hallie posted the other day on the "invisibilities" of type 1 diabetes.

The "invisibilities" of this disease are like a double-edged sword. On the one hand, I am thankful for Joe's "normal-ness" in his appearance. His ability to run, jump, skate, bike, scooter, gallop, skip, and careen astounds us all. I am thankful for it; truly I am. On the other hand, what is difficult; what sucks; what is painful is that the very thing I am grateful for is the very thing that detracts on why a cure is so desperately needed. It takes away from all that is done "behind the scenes", hourly, to ensure Joe's safety and wellbeing. The hidden sequella of it all can lull you into a false sense of comfort. It can lull the public into the inaccurate perception that we "have it under control".

We don't.

The news of the death of this child could be about The Mahers...about Joe. It could be about any person with type 1 diabetes and their family. That is the cold hard truth. That will remain the cold hard truth until a cure is found.

Diabetes is deadly. Diabetes kills. Diabetes increases morbidity and mortality.

A day-in-the-life of mourning one of our own.

Links:

The Painful Truth of My Nights

Tomorrow Isn't Always There

Children With Diabetes: Dead In Bed Syndrome

WELCOME TO MARS!

NaBloPoMo: Day 27 (Just.3.More.Days!)

Have you ever been curious about what each of our homes look like? What does Meri's new house look like? Hell, is she even unpacked yet? Where does Heidi blog from? Where is Joanne curling up to catch this season's Amazing Race?



I am curious, I bet you are too.

So, today, for a lack of much to say due to my compressed and ischemic creative brain cells slowly necrotizing from the mucous influx and extreme "eyeball-popping" pressure after a pitiful attempt to do "Plough" during Yoga X, I am going to show you around our home.

The Maher's New (to us) Home

The Mudroom (10' by 18' of pure awesomeness)

There is so much space in this puppy that I decided to add a kid's craft/science center.

WTF? Seriously look at the nasty water.

Ah, yeah a jawbone from a cow? moose? We don't know. Any thoughts?

Joe made a snow globe out of a baby jar, and scrumpled up tin foil....hmmm.

The Kitchen

Grand Central

Grand Central with Joe's Log...the orange highlighter is HIGHS/blue is LOWS.

Our Family Contract...Note: the "no whacking with a shovel" - Joe's idea.

Laminated Allowance Expectations

Where all the "Blogging Magic" happens. AND where "Pancake Ass" takes place from the long blogging hours I have put in this month.

Dining Room

Cute Broom Closet

Let's open it and see what is inside...

Oh look, it's a sharps container! What home is complete without one?

Oh and in pantry #2 we have more "d" supplies!

My favorite painting. Bridget thinks the blond girl looks possessed.

My favorite family photo...

The T.V. Room

The Screened-In Porch

More treasures... remember all of the boxes of rocks I moved?

Saw this guy as I was taking pix...couldn't resist. Funny how Lego people cannot look violent even with a machine gun in their hand. Why is that anyway?

More of Joe's creations.

Home Theater (in the basement)

More "d" supplies

And a few more....

A day-in-the-life of the Maher's (pronounced "Mars") at home. Thanks for dropping by!

THE MAN, BEHIND THE WOMAN, BEHIND "THE BUDDIES"

NaBloPoMo: Day 25
Special thanks to Misty's MeMe post, Cindy's candidness, and Renata's gracious post for giving me the courage to post on my husband and our relationship with "d" in the mix.


Nyquil, Ibuprofen, Afrin, Advair, and Xopenex are my best friends. Well, I take that back, my husband is my best friend. He manned the house, kids, dinner and movie night while I was medicated and sedated for the previous 13 hours. My drug-induced medicinally-crafted sense of wellbeing has me upright and ready to post this morning. I have decided to share with you, today, about my other half. Not necessarily my better half, come on, you guys knew I wouldn't give him that much credit. I am your vain Portuguese Princess after all. I think with Dave and I, the sum of our halves equals a pretty spectacular, synergistic whole.

Our complements are by far too numerous to list here, but off the top of my Nyquil infused, fogged brain here we go: I am flamboyant, he is reserved. I am a laborious work-horse, he knows when to "take it easy". I am emotional, he is even-keeled. I am a social butterfly, he tends to keep his social circle tight. I hate to shop, he is my grocery store and Costco monkey boy. I like things tidy, he is somewhat of a slob. I am carefree with the children, he is a little uptight. He keeps tabs on the family finances, I could not be bothered with such mundane details. I am the full-time pancreas, he will step in when needed. He sits with the children to teach them "important" life lessons, I am more the "day-to-day" manager of the crew. He is 110% about anything he feels passionate about, I am more like 85% about everything. I would do anything for our family, he would do anything for our family...

and he does...

This man works 50+ hours a week to provide for his family. He leaves the house with a smile on his face, a positive attitude, always looking to make it a good day. He picks-up the night time blood glucose checks on the weekend to give me a break and will often take over during the week if my work schedule fills-up. He loves to laugh, he loves computer games, he loves beer, pizza, and hockey. He rarely complains...only if it is hot... I won't go into his hyperhydrosis issue. He recognizes when he needs to change, to improve upon something and he does. He is open to criticism. He actually welcomes it and he utilizes it to improve upon himself. After my Food Rage with the Shrimp Guy in the Buffet line post (a good one, by the way), Dave stepped it up, and has learned to take Joe out to eat without me! He makes me feel loved, accepted, and adored. He loves me unconditionally even when the "Bitch Switch" is ON. He has been loving me for over half of my life now. We met in 1990 as freshmen in college and have been together since (sans one tiny break-up). I would not be who I am today without the love and support of this man.

When we were discharged from the hospital after Joe's diagnosis, a nurse gave me a book. This book had nothing to do with the pathophysiology of Type 1, it had nothing to do with the rigorous management that this newly diagnosed condition required, it had nothing to do with the latest and greatest research. It was a book about how parenting a child with type 1 can affect your marriage.

Huh?

Funny, at the time that baffled me.

I was somewhat prepared to lance, poke, expel blood, read meters, measure and weigh food, and inject my son with insulin, but I was not prepared for strain on my marriage. The thought had not even crossed my over-loaded, fact-burdened mind. There it was. In black and white, the day-in and out strain on a couple managing type 1 in their child causes rifts, strain, separation, resentment, the list could run on and on I am sure.

While I read this book, 2 days after diagnosis, I would think "not us", "heck no", "Dave and I are a team to the end", "this book is talking about other people", "we are as solid as they come". And we are, we were, we will be... "solid", "durable", "dependable". Have we stumbled? Sure. Have there been times where I felt resentful? Hell, yes. Have there been times where I have kicked him out of his peaceful slumber to do the night check because I cannot lift my weary head? Absolutely.

For the first couple of years after diagnosis the previous question and answer session would not have occurred. BUT, like water seeps and wears and carves the rock of this earth, diabetes seeps into everything, marrs relationships, ebbs into our interpersonal connections, especially marriage. I like to think this is normal; that Dave and I are like many of you. We carry on, we balance busy lives in addition to the daily rigors of "d", and that perhaps we will emerge a more loving, caring, cohesive team through it all.

"D" minutely seeping, carving, transforming everything, everyday, during my day-in-the-life parenting a child with type 1 diabetes.