Strange Coincidence or Something More?

The Boston Channel

I have no way to embed this, so bear with me and click on the link above to view the video.

I saw this story on my local news last night, and I'm not surprised to learn about the large clusters of Type 1 diabetes in certain areas at all. I for one, don't think it's a coincidence that these kids are grouped together, and I absolutely believe that something in their environment has been the " type 1 trigger." What that is could certainly be different for Noah than for these kids, but I feel in my gut that it's always caused by something...it doesn't just happen out of nowhere. I'd love to know everyone's thoughts on this.

Take care of you.

Playing house was something I did with the other little girls I grew up with, and we played for hours. I was always the "mom". I loved it, and looking back, I think that instinct of caretaker was something woven into the fabric of me from the start.

Being a wife and mother, and being good at it is something that's very important to me. I always worked full time, but when Noah was born, it was so hard for me to leave him with daycare every day. I cried most mornings during my commute, and most nights, I crept in to his dark room to lean over the crib to kiss my already sleeping baby good-night. I missed him terribly. I became a stay at home mom not long after Noah turned two.

I loved being home, and taking care of my family. It was fulfilling to me- just being there, ready to offer comfort, food, a laugh, or company whenever they needed me. To me, being needed meant I was important. I worked on decorating our first house. I crafted, painted, cooked, and threw parties. If Noah's class needed cupcakes for a party, I volunteered. A friend needed a babysitter? Me again. I earned the good- natured nickname "Martha Stewart" from my family, and made good friends in the neighborhood.

The most important thing I did not do? I didn't notice when my identity got right up, and quietly walked out the door.

I thought being a good caretaker meant giving every ounce of myself, or else it would make me look selfish. Therefore, I rarely did anything for me. It got even worse after Noah was diagnosed with T1, because this sense of "nobody can take care of him like me" swept over me like a hurricane. Diabetes naturally became the summit to the mothering mountain I climbed up and down every day.

Unfortunately, trying to be all things to everyone took a physical toll on me. My weight had always been an issue since before I got married, and it fluctuated every time a big life change came knocking. I didn't exercise regularly. I didn't eat anything that would be considered healthy. Pretty, girlie clothes were not something I would choose for myself. I opted instead for baggy, shape concealing sweats. I felt invisible, and rightly so, because that's kind of what I created for myself.

About a year and a half ago, after almost a decade of feeling blue, tired, and generally shitty all the time, I agreed to go with my friend to the gym. It was the first step to making some huge changes in my life. I got stronger, and more confident. I started to care about me for the first time in (I now realize ) my whole life. I learned it's okay to say no to some things. More importantly, I learned to say yes. Yes to new experiences. Yes to life.

Above all, I have learned that to be able to be the very best wife and mom I can be, I've got to be caretaker to myself first. After that, all the good things fall into place.

One Day.

Noah at Disney World, 2005

I had a dream last night that we were at Disney, and Noah didn't have his pump. Jon and I were frantic. We emptied the suitcases, and looked all over the hotel room, and Noah kept saying "I don't need it today. Today, we're in Disney, and there's no diabetes here."

Pretty weird dream, considering the fact that our family vacation in Disney in 2005, is the time I think about the most as our "BD time"(Before Diabetes). It was before the biggest change in our lives to date, and I think back to that time often. We were so blissfully unaware of what was about to hit us.

I've always said I wanted one of those dream interpretation books, so I can find the hidden meaning behind dreams. The meaning behind this one, I know is a no- brainer.

I want one more BD day.

If you could have one day with no diabetes- that's 24 hours free from testing, boluses, counting carbs, feeling the dizzying lows and headach-ey highs, tubing and syringes- how would you spend your time that day? What would you do? What would you eat? Would you go anywhere special? How do you think it would feel?

The reality of it.

Running away from the whole diabetes thing seems so appealing as of late. I'm sure anyone that's been affected by diabetes in it's many forms can commiserate with me. At around 4:30 the other morning, Noah crawled into bed with us, feeling low. Normally, I don't get worried when he's low- we just go through the motions of testing, juicing and re-checking in a robotic sort of way.

This time though, I could hear a whisper of fear in Noah's sleepy voice as my husband tested his blood glucose (it was tough even getting any blood...his fingers were so cold that morning) first once, only to get an error message, and then again. Not one to usually complain, Noah let down his guard down, and quietly exhaled, "I hate pricking my fingers"...

I hugged him close, and reassured him that it's okay to feel that way from time to time, and that we're so proud of him for putting up with all that he does every day.

Noah's frustration over that morning's testing didn't stay with him for long. He followed through with his day with his usual exuberance, and happiness that I love so much about him, but for me, that sinking sick feeling of not being able to "fix" my child wouldn't stop it's nagging. How I wish I could chase diabetes away, protect him from it, or take it on as my own. He never gets a break. His fingers and pump sites always hurt. He constantly has to plan, and put aside the spontaneity of youth. It worries me when the cracks in Noah's diabetes armor start to show. Even though it's been 3 years and counting, I still feel like like a diabetes newbie, and I don't always know the right things to say or do when it comes to helping him navigate life with d.

How do you push through the rough times?

Raise Your Voice for Type 1 Diabetes

Noah's diagnosis day is a blur. Sure, I can go back through loads of paperwork to find the exact day, but off the top of my head I don't know the exact date of diagnosis. I think it's better that way. It's not a happy occasion, like a birthday or wedding anniversary. It's a day I'd love to bury in the back of my mind. Impossible. It's the day I thought my child would be taken from me. It's the day that a cloud of despair fell dark and heavy over our lives. Yes, most details of that day are fuzzy- but a few stand out clearly in my memory and if I close my eyes, it's like watching it replay on a movie screen...

Spring, 2005

In the morning Noah is crying. He comes into my room and tells me he's wet the bed again. It's the third time this week.

More, water please mom? I'm so thirsty.

Our good friend mentions the word diabetes, after we told him that Noah's been having accidents. I call the doctor the next day and we go in for tests.

The pediatrician calls us early in the morning, telling us to go directly to Boston, and that Noah will be in good hands.

Sitting in the cafeteria, all I could do was stare at Noah's hospital bracelet.

I bought a notebook at the gift shop, and filled it that day. I still have it.

The realization of what we were up against when they tested Noah's blood sugar the first time. He didn't just cry. He flipped out. It was too much for a little kid. It was too much for us. I wanted to scoop him up and run away.

I didn't cry.


That's what I remember most about that time. I was too busy learning and doing what would keep Noah alive and well and healthy.

I remember another day, too. A better day. The day when I realized that we are doing all right by our son. It was in the summer. Mere months after his diagnosis, and I overheard him explaining diabetes to one of his cousins. "I wish I didn't have it, but it's no big deal", he said.

The tears finally came, and with them came a kind of peace - a knowledge that everything would be ok. That diabetes is strong and stubborn, but it is no match for what we can dish out.

Revisiting the Past

I was in Target last week in the book section, not looking for anything in particular. I picked up a random book here and there, scanning the back cover quickly and putting it back when my hand hovered over: "Please Stop Laughing at Me..." by Jodee Blanco. The words "...school bullying..." on the cover immediately rang true for me. I sucked in a breath of nervous air and picked it up and opened to somewhere in the middle.

I might as well have been reading from my journal from when I was 12. So much of what Jodee writes about in this book happened to me too. She told of kids cramming fist fulls of snow into her mouth...for me it was playground wood chips. She had cruel notes passed to her during class, as did I. The similarities took me back to a time in my life that I so desperately would love to forget but that I think about way too often. As I read the book over this past weekend, I thought of my sweet son. Only 9, but bullied far too much already.

When Noah was first diagnosed with Type 1 in 2005, he was on injections and flew under the "weirdness radar" so to speak. He went to the nurse for everything, and the kids in his class were none the wiser. He was well liked and had friends in school.

Last year he went on the pump. For us it was a step up to tighter control of blood glucose, and more freedom for Noah. For the kids at school it put Noah in a new category and labeled him weird. They had visual proof that he was not like everyone else. Bullying started. I know kids are afraid of what they don't know, and as a result tend to make fun as a means to cope. They didn't tease him about the pump, or diabetes though. It was as if that one little difference caught their attention, and that's all it took, really. They got on his case about anything and everything. From the sneakers on his feet to telling him "your parents don't even love you". A few kids on the bus threatened him daily. One boy went so far as to tell Noah he was going to shoot him in the head with his bow and arrow.

The stress of it all got to Noah. His grades suffered, and he became an emotional mess but more importantly his blood glucose was all over the place. (It's well known stress can wreak havoc on blood sugars). It broke my heart and my husband was livid. This kid who was so easy going, and never once complained about going through the changes of being a person with Type 1 was showing some major cracks in his armor. It eventually eased up but we had to do some ranting in the process. After realizing this was more than a boys will be boys thing, we worked with the school and they helped in a huge way. I'm grateful for that. When I was a kid being bullied right in front of the recess monitors while they smoked their Parliament 100's and did nothing was the norm. You were labeled a tattletale back then if you made so much as a peep.

I'm glad for the chance to go back and revisit how I felt as a kid in school. One thing Jodee's book made me realize is that I hang on to those insecurities and fears way too much for a 34 year old. What kind of example am I setting? At some point I have to get over it and believe in ME...not other people's view of me. I know that Noah will look to me for cues in how to handle bullying and other struggles in his life, and that I'll have to make good on my own advice.

Flawless

First, to get it out of my system:
New England Patriots 11-0!!!!!

Thanksgiving blood sugars for Noah were unbelievable. I mean, spot on perfection even with all the rich food, and pie and constant grazing throughout the day. There was almost no effort involved (a couple things we even guesstimated on the carbs) and never did they go above 150. I couldn't believe it!!!

I wish every day with diabetes for Noah could be as effortless as that day- last night a 327 came along and bit us all in the ass. We were all taken by surprise by that one. I sometimes wonder if his BG meter just spits out random high numbers, so I will have him re-test and use more strips and have to buy more, making the strip companies that much richer...

Conspiracy theories aside, save for that weird high, it was a great long weekend full of family and friends. As we recapped the events,my husband and I were saying how carefree the d- management was this year, and it dawned on us that it's Noah's first Thanksgiving on the pump. It seems like he's been on it forever, but it's been just under a year.

It's a bit of a sad feeling of acceptance. That thing that was so foreign and scary to us not so long ago has become a (sometimes)seamless and integral part of daily life for all of us. Is has become so routine.
Just like they told us at the hospital - like brushing your teeth, it will become automatic, and they were so right.

This is our life, far from flawless, but I believe it's the way we are meant to live it.

Sorry seems to be the hardest word.

I am not a scholar by any stretch of the imagination. Nor do I have hundreds of thousands of dollars invested in higher education. No, I am your average High School graduate with some street smarts and alot of "life experiences" under my belt. I am not an eloquent blogger, turning the everyday into poetry. My words and stories will probably never win any literary kudos. Some of my favorite d-bloggers are geniuses at this and I wish that I could be even a smidgen like them, but I can't mold myself into something I clearly am not. I write about life, and I try to be as honest as I can.

The ugly bits are sometimes all I can think about.

Noah's one year pump anniversary is coming up ,and I've been going over the last year in my head. I would love to say that it's been nothing short of awesome, what with the new found pump freedom and such. Should be no sweat. It was a tough transition and only in the past 4 months have we really been able to relax around here.

To be frank, I can be a bit controlling and picky. things have to be a certain way. In trying to make everything in our family life run perfectly smooth , I can be quite the bitch if something does not go my way. During the first few months of getting used to the pump, I was impossible to please. Now,to give you an idea of the kind of guy he is, my husband is quite possibly the best and most patient man on the face of the Earth. He is an incredible father, attentive, fair, fun and kind. As a husband, he is my best friend. I can truly call him my partner. I trust him with my life, and love him like crazy.

During this time, he was learning and trying to do his best. He slipped up a couple times while learning, as we all do. I was panicked, and took it out on him. I must have said a million times, "what would happen if I dropped dead tomorrow?!?!?! You would have no clue how to do all the D. stuff."!! I called him an ass under my breath, snatched infusion sets away from him in a huff, and instead of reminding him how it was done, made comments about how he "didn't even pay attention when the pump lady came to the house to teach us".

I was terrible. I was mean.

Looking back, it's easy to see I was clearly afraid I would be the one to screw the pooch, but instead of confessing my fears, I lashed out on the easiest and most convenient person -my sweet husband who was just trying his hardest to help our son. This is not the person I normally am. I spent my time from day one of the diagnosis trying to be strong, brave, tough, whatever. I became a bully to the one person I promised to trust and support forever.

If there was a way to go back and change how I acted in those situations, you betcha I would go.

I guess this is a public apology of sorts, and to my sweet husband I say, "I'm so sorry, and I love you."

Diabetes in Numbers

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Over 6 million people are diagnosed with diabetes every year.

This video was shot as part of the activities at Full Sail, for World Diabetes Day. Shooting and editing was done by Brett Novak, a Digital Art & Design student at Full Sail.

Music: http://www.2litros.com/
Video: Brett Novak