Thursday, January 28, 2010

Diabetes Expects So Much From The People Whose Lives It Infiltrates.....

"Diabetes expects so much from the people whose lives it infiltrates, regardless of the decade of diagnoses."

I tweeted that to my friend Ellen @CureT1Diabetes last night before I went to bed- and I absolutely believe it to be true.
I've seen diabetes effect every single member of my family, whether they had diabetes or not. And I know you have too.

The other day, I ran a post originally (and improperly titled) Did You (Or Did Your Parents) Take An Active Part In Your Diabetes Management.

I was at my contract job- and wrote the post between projects. The title should have read more along the lines of: Grown Up CWDs & Todays Parents of CWDs- Did You/Do Your Kids Participate In Their Diabetes Care?

I tried fitting different variations in the subject line- and all of them failed, including the one I used for the title.

But even with an iffy title, the post generated lots of discussion on my blog and a forum on I WAS SO grateful to read what others have to say, and I learned so much from every single comment I read.

Many parents thought giving a cwd some responsibility (depending on their childs individual level of maturity) was good, others thought my parents were nuts. And I totally get where they're coming from, but honesty, that couldn't be further from the truth.

My parents had 6 children, and three of those children developed Type 1 diabetes.

My oldest sister who is 20 years my senior developed diabetes at the age of 12, in the early 60's. She went on to get married and have three beautiful boys, and 4.5 years ago, she became a grandmother for the first time.

My second sister (we have 4 girls in my family) was diagnosed at the age of 12 in the late 60's, and she had lots of issues- not all diabetes related. She grew up in a time when diabetes care was restrictive- and she also was a person who developed substance abuse issues as a teenager.
It was the early 70's, the country was going though lots of changes, and she was doing EVERYTHING a teen shouldn't do, let alone a teen with diabetes.

MY parents tried, but when she moved out at the age of 20, her life took a downward spiral.
She was unable to care for her diabetes on her own - and alcohol and mental issues continued to play a big part in her life.

She moved back home the summer before I entered 3rd grade, which happened to be the summer right before I was diagnosed.

She died from diabetes complications in January of 1991- she was in her early 30's. I was in my early 20's. My mother missed her funeral because she worked so hard caring for my sister, that her heart went into Arrhythmia 4 days before my sister died. She was in the hospital for a month- and we couldn't tell her my sister had died. My dad never got over it.

When I was diagnosed in October of 1977, my parents were devastated, and the worked round the clock to care for both my sister and I.

I think one of the reasons my parents allowed me to actively participate in my own diabetes experience was because they saw how incapable my sister was of handling her diabetes when she moved out. I think I also saw how incapable my sister was and was determined not to make her mistakes.

I was a kid. I played pretend, took Tapdancing and Jazz lessons, played Barbies, and climbed trees. I wasn't calling my endo with my number, or planning out meals. But I was able to feel like I was helping - and that made me feel confident regarding my diabetes.

Bottom line, my parents worried, they watched me like a hawk, put their own health in jeopardy to make sure mine was OK. Mistakes were made on both our parts, but they did their best.

Today- diabetes management is SO DIFFERENT. Nothing is off limits, glucose monitors take all of 5 seconds to work and insulin pumps have made all our lives either.

Today, Endo's; parents, and PWDs are so much more informed and educated. Today both parents, PWds & CWDs have a voice. SO WONDERFUL!

And today, just like years ago, parents of CWDs work incredibly hard to take care of their children 24 X 7. AND IT NEVER ENDS FOR THEM - Even when we grow up and leave the nest- they still worry 24 X7 about us!

With that being said, I've decided to repost (again) one of my favorite Letters to Diabetes ever. I wrote and originally posted this Thank- you to my parents- and every parent of a CWD out there on 3/28/2010.

Thanks to all the parents of CWDs, from the bottom of my imperfect pancreas!

Dear Mom and Dad -
I don't think I ever said it before, but THANK- YOU so much for taking care of me;
Debbie, and Donna.
God give you 6 kids and 3 girls with Type 1 Diabetes- I don't know how you did it.
How did you take care of us all those years ago, before the technology and research?
Before the open forum of communication on the net and the freedom of carb counting and insulin pumps?
Back in the days when urine testing required fizzy pills and glass tubes, a clumsy and and inaccurate way that was used to measure our sugars way back when...
Until Blood Sugar machines the size & weight of a brick came about.
These antiquated "machines" took 5 minutes to calibrate and another 5 minutes to measure your sugar.
They were far from portable, required metal lancets that hurt like a bitch, and God only knows how accurate they really were.
They were also VERY expensive.
You bought one with money that we didn't have so that we could gain control. Instead of thanking you, I bitched about it.
I wanted to be NORMAL & fought you tooth and nail. I'm sorry.
I don't ever remember you crying when I was diagnosed.
I know you did, but you kept your tears behind closed doors and in the dark.
You always entered my hospital room with a smiling face and a bunch of new "Romona" books for me to read.
I just did the Diabetes math. I was 8 at my diagnoses, Donna & Debbie we're both 12.
Donna is 20 years older than me and Debbie was 14 years older.
So, if I've got the math down correctly, 1st came Donna at the age of 12.
When she was 18, Debbie was diagnosed at the age of 12.
Which means you had 6 years before 1 Diabetic daughter became 2.
You had 10 years before 2 Diabetic daughters became 3.
Donna had married and moved out four years earlier by the time of my diagnoses.
Your daily diabetes family life was just getting easier when I joined the Club of D.
It must have been so hard for you to handle...And even harder for you to hear.
Mom and Dad, I'm so sorry that my diagnoses hurt you, and for what all our combined diabetes has put you both through.
You never let us feel sorry for ourselves. I never grew up with a hatred of diabetes.
Though deep in my heart, I hated what it did to you.
I think it really helped when dad sat me down long ago in my hospital room and said; "Kelly it is what it is, do what you have to." And I did.
Daddy knew from experience, because he was a T1 as well.Mom, you posted the ADA diet on our kitchen wall, right behind my seat at the kitchen table.
You measures portions fanatically, right down to the grape.
You'd dole out 12 grapes for my snack & I'd give them back and say in a venomous Tone:
"Keep Em! Who can eat 12 grapes?!"
But u were just doing your job and never wavered.
I never experienced chicken with the skin on it until I was 21,
and to this day, have never had a class of OJ that was more than 1/4 of a cup.
I don't even drink juice anymore..
Dad, you body surfed and swam in the ocean every summer, and you shared your love of all water sports with me.
Together we became part of the waves, while maintaining good numbers.
You rode your bike every morning, and when you passed by my bus stop Freshman year, I was embarrassed instead of proud.
I'd give anything to see you peddle your bike one more time. I'm sorry.
You and mom took long walks every evening with the dog and you always said exercise was the key.
You were meticulous, bordering on the insane, about what you put in your body.
A militant soldier when it came to food.
Only skim milk, fruit, and eating only whole grain bread before it became the rage.
While I longed for "Wonder Bread," you put the kibosh white bread of any kind.
I thought you were mean, but you were smart because you still let us enjoy ice cream.
Diabetes took so much from you both, most namely your daughter Debbie.
Daddy, you never recovered from her loss. Every time you spoke of her death, I heard sadness and anger all mixed together.
It broke a part of you that all my jokes couldn't fix.
Mom, you cared for her (for all of us,) with such gusto that you're heart literally started to skip beats.
The scariest moment of my life was when you and Debbie were both in separate hospitals.
I came home from school to an answering machine full of voice mail that told me nothing and everything.
I knew one of you had gone to heaven. I was so scared it was you.
I felt so guilty (yet relieved, because I still had a mom) when I heard it was her.
What got me thinking about what you both did for me?
All the parents of Diabetics kids whose blogs I read.
I hear what they go through everyday and I immediately think of you both.
They tell me what you wouldn't.Parents of diabetics are a different breed entirely.
They are strong, keeping a smile on their face when they take care of their kids, even when they feel like crying out in pain.
These parents have the strength to say "no" to their kids, even when every fiber of their soul wants to say yes to them.
Strong enough to take their kids blood in the middle of the night, insert infusion sets that make their babies cry,
give-up gluten with a smile that never seems forced, and count carbs until it becomes second nature to everyone in the family.
These moms and dads have the fortitude to let their diabetic children grow to become independent young adults.
Even when they know that independence means that their kids will make conscience mistakes in order to fit in.Diabetic parents hate the disease, but are strong enough to not let their kids hate it.
Because if they did, their children would never learn to accept and love themselves.
To every parent in D-blog land, THANK-YOU.
I know when your kids are old enough, they will tell you themselves, and they will have meant from the bottom of their hearts.
To my parents, THANK YOU.
I wouldn't be here today if you hadn't worked so hard to keep me healthy.
You taught me to pick myself up by my bootstraps and move forward.
I hope I'm making you proud.
Love You Both!


Anonymous said...

Great post K2! As a PWD (parent w/ diabetes), my children can usually tell when I'm low, often before I can. Other than that, we tried to protect them as much as possible from knowing about the long-term risks. Kids don't need to worry about stuff unless necessary.

Though, knowing what I know now, that may not have been the best approach. They've "learned" about diabetes just like everyone else does, through what shows up in the media. And we all know how great that info can be

Crystal said...

Fantastic post k2!

I am 31. Both my parents still play an Active role in my T1 Diabetes management. They listen. They support. They help where they can. We all make jokes, share memories and dream of my future Together.

They are my best friends. I would be lost without them and all they have done. All they did. All of it. Everyday.

Stacey said...

I knew I would cry! My 5 year old was diagnosed just before he turned two. It helps so much to read what you grown up type 1 "kids" have to say. Thank you.

Rachel said...

What a great post! I had to walk away 3 times so that I wouldn't cry. One of my biggest fear relating to diabetes is giving up control and how Tristan is going to handle it. I'm hoping, as a parent, that I'm providing him with the right tools and the right attitude to manage his diabetes properly when he's older. I hope that he will make the right decisions. Hopefully having lived with it most of his life (he was diagnosed at 16 months, he doesn't know any other life) he won't do things that are dangerous just to fit in!

I'm fully prepared for a fight :) But I can honestly tell as a parent Kelly..... you don't need to apologize to your parents. We understand how difficult it is for you guys. Being a teenager is hard enough, adding diabetes to the mix.... well that can be a very ugly picture! :)

Thank you for being so open and sharing that with us. I, for one, take comfort in your words. I see in you the result of hard work from your parents. This gives me hope for the future! Thank you! :)

Penny said...

Thank you for sharing this beautiful letter to your parents. What a wonderful gift to them. You are a wonderful gift to them - with your resilience and your strength. They should be so proud of you.

I only hope that I am able to give Grace strength and hope for the future. When she looks back on her childhood with Type 1, I hope she looks back with the vision that you have Kelly. It would be one of my life's greatest pleasures if I am able to raise a healthy, happy well-adjusted and hopeful daughter with Type 1.

Your quote:

"Diabetic parents hate the disease, but are strong enough to not let their kids hate it.Because if they did, their children would never learn to accept and love themselves."

That hits the nail on the head for me. Teaching her great care of her disease, while giving her the strength to embrace it, own it and accept it. Such hard work at times.

Thanks again for posting. It's just beautiful.

Mike LeBlanc said...

Amazing post K2!

It epitomizes what I want for our daughter Adele when she grows up. If she can find a reason for all of her T1 challenges and is able to use this to continue to make a difference (like you K2), we will have succeeded as parents.

thnx for sharing...