Pray.

When Noah was diagnosed with Type 1 diabetes, we felt like our world was falling apart. I remember the doctor's explanation in a vague, dreamlike way. Nothing about what was said is crystal clear in my mind, but the feeling in the pit of my stomach is something I will never forget. Sick, and twisty. Not butterflies but the beating of leathery bat's wings.

In the 5 years since, life has become as normal and everyday as it can be when you're a busy family with the occasional crazy blood glucose or weird A1C result. I was confident that new sense of normal meant I would never feel that bat in my stomach again. As the saying goes, life goes on.

Unfortunately, the news of late has been anything but normal around here. My husband had brain surgery to remove a tumor that was recently found and was causing him to have seizures. The day he was to leave the hospital, we were told by the oncologist that the tumor was a malignant oligoastrocytoma. We were not prepared at all for that outcome. Of course, we knew of the possibility of cancer but it was presented to us as remote by the many specialists visited over the course of 2 months leading up to surgery.

I sat in the hospital room with my husband and cried while the family of his roommate on the other side of the curtain joked and laughed. It's funny the things that stick in your memories. I also remember the overwhelming feeling of being cheated out of a long life with the man I promised to grow old with.

Later that day, they sent him home.

Three days went by, and we shared the news with immediate family. The outpouring of support after coming home was unbelievable- meals were dropped off at our home, cards and phone calls were abundant as were words of encouragement and prayer. We began to feel as though we could get through it.

I had been relying on my mom to hang with Noah during the days I stayed late at MGH, and she was so generous with her time and her help- all while nursing a chronic sore back, so on Jon's third day home from the hospital, it was a nice treat when my mom stopped by the house just to visit and hang out.

We sat and talked. That's when my mom told me that she was diagnosed with cancer during the same week Jon was recovering from his brain surgery. It was her back pain that prompted her to visit her doctor. I learned that while I was at MGH in the morning, my mom was also at MGH having tests and meeting with specialists. Then, she would drive the hour back up North to be here at the house when Noah got home from school.

I sat there, completely ripped apart and crying thinking of how my mom was alone when she learned that cancer invaded her lungs, liver and spine.

That was 2 months ago. Lots of things have happened since then. Jon has started radiation therapy and is at the halfway mark. Mom is doing chemotherapy, and is tough as nails. Noah took the news very hard at first, but over the last few weeks he's been doing better.

The truth is, it feels like living in the Twilight Zone. There are good days and shitty days. Despite feeling like the rug has been pulled out from under my life, I refuse to sit in the corner and cry. The support from friends and family has been so uplifting and has proven to be incredibly healing.

Who knows what will happen in the next year, month or even day. Please take the time to tell the people you love just how much they mean to you. Take care of your health. Go to the doctor if something seems "off".

And please, pray.

Talk. Listen. Repeat.

Some people like a challenge. It makes them work harder- try to prove something to themselves or others. I guess I fall into that category most of the time, but recently it's been hard for me to get through the D stuff with a smile on my face and my usual unwavering fighting spirit. The numbers make me angry. The cost worries me. I have lost sleep over the minute details of diabetes too many nights to count.

It's no wonder that the needs of the one person in the center of all this- Noah - the most important person, in fact, get lost in the shuffle. My mind is constantly on numbers, strips, ratios, research, money...
Yes, all that is important and won't go away, but I realized recently that paying so much attention to those details has taken my focus away from helping Noah with the challenges he faces every day. I'm so used to being a cheerleader- encouraging Noah to go with the flow and, doing the whole, "we're not afraid of dumb old type 1 !" thing , that I fail to see that he might be struggling in his own way.

It's time to stop, keep quiet and really listen to Noah without jumping up all full of piss and vinegar wanting to conquer his fears. I might be surprised to find he doesn't want a cheerleader...just a mom.

Words make a difference.

Noah was lucky to receive a TON of mail from us and the rest of our family while he was at camp. He was eager to share it with us, and so as we helped him unpack I paused to read each one. A cute card in particular (from a very close family member) caught my eye and I read the short message of encouragement once...twice...a third time. I couldn't believe what I was reading, as my eyes repeatedly ran across the scrawl. Amid the uplifting message, one phrase had my maternal instinct rising up in a fireball of fury.

Quoting from card: "It must be nice to know you're not the only one with this problem."

Problem. Problem. Really?

Not having enough toll money is a problem. Being stuck on the elliptical machine next to overly sweaty guy is a problem. Lindsay Lohan's appeal and fame is a problem...

This very close family member has been consistently lacking in any desire to learn more about Type 1 from the start, (no matter how many times we explain to her that Noah is on no dietary restrictions, she always plays Food Cop with us) so I shouldn't be all that surprised or expect anything more than ignorance on her part, but this message was written to Noah from someone he's supposed to trust. He's 11. He has Type 1 diabetes, and will continue to have Type 1 Diabetes always. He knows this. He doesn't need negativity and to be told what he's got is a problem.

No laughing during Mass!

Yesterday, the three of us sat in the pew as our pastor gave the few closing announcements after mass. A few rows up, and to the left, I noticed a boy, old enough to know better, with his finger knuckle-deep in his right nostril.
I turned toward Noah, and a horrified thought went through my head- if he sees that kid, it's all over, I'll never get him to stop giggling. How am I going to distract him?
I was too late. Noah's mouth hung open, watching the boy deposit his nose nugget into his mouth.
Nudging Noah with my elbow, I hissed "don't even..." as we both glared. That's when I lost it.
I made such an effort to not laugh. Every second that passed watching this kid was like torture. He just wouldn't stop. As I tried to hold in the snicker rising in my throat, a soft *snort*! escaped me. By now, Noah had tears streaming down his ruddy cheeks and our two sets of shoulders jerked freakishly up and down, as if pulled by some crazy puppeteer. My husband looked at us and moved two steps away, probably convinced that by doing so, he was telling the rest of the parishioners, "I don't even know who these crazy people are".

I won't be getting any awards for being a good influence this week!

We go to eleven.

Sunday marked the anniversary of the day I married my best friend- the person who thinks this nerdy girl is cool, who loves so freely and honestly, and who is without a doubt the most supportive and giving person in my life.

Over these past eleven years, we have weathered storms and celebrated huge victories. Shared inside jokes, and personal pain. We've laughed till our stomachs hurt, cried till tears would no longer fall, and held each others hand as we walk together through the very bumpy terrain of life.

I wouldn't change one single moment.

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?

July in a flash.

3 weekends ago...

The countdown to the preparations for Noah's 10th birthday was on. On that Saturday my mom volunteered to have him for a sleep over so Jon and I could shop for gifts, and have a long overdue date night. His BG had been running on the high side, and correction bolus after correction bolus came and went with not even a downward nudge. By 11 p.m., it was clear that his site was no good. My mom brought him home, and they made a plan for a re-do sleepover the next weekend. It was the first time I've seen Noah cry over his diabetes since his diagnosis, and it was a killer.

2 weekends ago...

We hit the ground running after Noah's endo appointment, and small get together at my grandfather's place to celebrate Noah's birthday on Friday, and picked up speed on Saturday for the 1st Annual New England Diabetes Meetup. Put together beautifully by Bernard , it was a wonderful experience. Jon and I learned alot, and met some incredibly smart, witty, and kind people. We got great advice about everything from diabetes camps to new technology. I can't wait to do it again! It just reinforced for us how amazing and caring this diabetes community is, and having that kind of support available is priceless.

Feeling the good D karma, Noah went off that night to my mom's for "sleepover, take 2". Huge success.

Sunday dawned bright and warm- perfect for the big birthday party. We got down to some fun with friends and family here. I made a ton of food- Jon was the master of the grill (and the master of flinging water balloons) and at the end of the day, our exhausted and excited boy said it was his "best birthday ever"!

1 weekend ago...

It's funny how the most recent of the past 3 weekends is the one that I can barely remember. It was pretty hot and humid, so I plodded through the weekend in a kind of stupor. Noah went blueberry and raspberry picking with my mom on Saturday, and brought back a TON of goodies. That boy can pick some darn good berries, and we've been feasting on these sweet jewels of yummy goodness since.

Sunday, we were off again! My mom, Jon, Noah and I hopped on the train for a trip to the Boston Garden to see Walking With Dinosaurs. We had a great time at this very interesting, educational, sometimes funny and a little scary look at the history and legacy of dinosaurs. We had some time to kill before our departing train, and took a little walking tour of Boston. We were conveniently located right near the New England Aquarium, and who can resist the faces of those cute little harbor seals? Off the four of us went. Being down by the water and breeze made the heat bearable.

Things kind of crumbled after that. To make a long story short, by the time we made it to Quincy Market, we were all hungry, thirsty, tired, had to pee, the temp was 90 with 100% humidity, and there was a thunder storm- forcing us and about 30 other sweaty tourists to cram into a glass vestibule outside the "Cheers" bar and wait it out. That train ride could not come soon enough!

The plan this weekend is to do absolutely nothing.

Randy Pausch

"Brick walls are there for a reason. The brick walls aren't there to keep us out. The brick walls are there to show us how badly we want things."-Professor Randy Pausch

Last week, my husband and I watched as Diane Sawyer interviewed Randy Pausch on TV. He's a professor of computer science at Carnegie Mellon who delivered his "last lecture" called Really Achieving Your Childhood Dreams, in September 2007.

I had never heard this man's name before. I almost changed the channel but something stopped me. Maybe it was the video of him playing with his daughter...her two tiny feet planted safely in his palm as he balanced her precariously on an outstretched arm, as they both laughed.

So I kept watching. Turns out Randy has terminal pancreatic cancer, with maybe 6 months of good health remaining. In the footage they showed from his lecture, he talked about it openly but briefly, and with a tone of hope and strength. Not despair. I was instantly drawn in by that sense of strength, his dedication to his family, and his humor.

After watching the show, I went on YouTube to see the lecture in it's entirety, and came away with a new attitude and game plan towards the many challenges in my own life. I approach Noah's diabetes-related hills and valleys in better stride now. I try to acknowledge the bad and move on instead of dwelling on it, and I hope Noah will follow that example and learn in his own way. Not giving so much voice to fear has made my whole family happier. I try to remember Randy's brick wall statement as a sort of mantra, and it has given me motivation in times when giving up was a much easier and more appealing road.

If you have a little time to spare, listen to this amazing guy speak. His exuberance for really living life is contagious.

Dear Noah,

Thank you for my breakfast this morning! It was so thoughtful and special of you to make coffee and pick out the perfect granola bar. I'm such a lucky mom. Don't grow up, ok?
Love & Kisses,
Mom

Feelin' Good

MB on the big screen

Tuesday night, my mom and I went to that Michael Buble concert I mentioned before. We had a blast. He puts on an awesome show, and is so funny, charming, and totally dreamy.

Too bad the guy next to us didn't think so.

We had seats on the floor with a nice view of the stage. Because we were early getting settled in our seats, we struck up a conversation with a very nice woman sitting next to my mom. We shared stories about different trip we've all taken, and concerts we've been to. The woman's husband joined her while we were talking, and the opening act came out. He ended up switching seats with his wife and was next to my mom at that point.
The opener was a group of guys called "Naturally 7". They were really amazing and talented singers, in addition to that though, they "played" all the instruments with their voices. One guy did the drum sounds, another guy did bass, etc. it was incredible!! They got a deserved and crazy loud standing ovation. (check out the video below)

Once their set was over, there was a short pause, and the lights came up. That's when he started- they guy next to my mom. He was in a near-rage: "what was that crap?... Oh, boy...was that crap!... I will NEVER see a Michael Buble concert again if this is the kind of nonsense he's going to open with...I couldn't even understand a word".

My mom and I just looked at each other, astonished. Picture this guy- head on a swivel, shouting his displeasure to anyone within earshot, and NOBODY agreeing with him. ha!! He went on like that for what seemed like an eternity, finally dropping down to a grumble.

Michael Buble took the stage, and Mister Nastypants actually cracked a half-smile: "THAT'S more like it".

Michael sang a couple of songs, then addressed the crowd in his charming way:
"How's everyone doing tonight? How'd you all like Naturally 7? Weren't they great?"

We all cheered our approval, and then in that instant during a quiet lull, our guy yelled in a booming voice that no doubt carried over the heads of the crowd, right up to the stage:
"THEY SUCKED!"

We and everyone around us were completely horrified, and I felt so badly for his wife- the nice and pleasant woman we enjoyed talking to earlier was obviously embarrassed. She had been so excited to see this show, and her husband was putting a black mark on that for her. Poor lady. They ended up leaving halfway through the show.

We didn't let Mister Nastypants ruin it for us, and had an awesome time! We even ran down the center aisle for the encore, and got super close. I got a nice bit of video but it's stuck on my phone!

Mom & Me waiting for MB

Here's the viedo of the opening act, Naturally 7. That heckler guy was off his rocker.
So incredibly cool! Naturally 7:

Fill er' up.

I have always been a "glass half empty" person. Sometimes, the smallest inconvenience can send me into a crying, shouting frenzy of panic and anger. So not cool.

I realize that's not the best way to live, so recently, I have been on a personal quest to learn to chill, and enjoy life to the fullest. So many things have happened in the past couple years that make life appear as less enjoyable, never ending drudgery. Learning to adjust my thinking - not to automatically assume or expect the worst in life has been tough. It's as if it's engrained into us as a society that bitching and moaning about life is more acceptible than loving life. That somehow, if you're truly happy and you want to share that with others, you're a fake and a phony. I'm beginning to see that is the furthest thing from the truth.

What I'm finding out, is that it's imperative to my well-being and that of everyone around me, to be enthusiastic, content, adventurous and fearless. That in becoming a "glass half FULL" person, I will bring that fullness into all areas of my life, and to all the people I care about. Like emotional osmosis.

We'll all be able to handle whatever comes our way- whether it includes combatting type 1, the rising cost of gas, impending teenage angst...it will all be embraced with optimism and a knowledge that it will make me, him & us stronger.

Slacker and the big mistake

Yes, it's been quite a while since my last post here. Alot has happened since then.

The Patriots won the AFC Championship, and are set to win the Superbowl this Sunday! (GO PATS!)

I have lost a total of 5.5 lbs, and have made strides at the gym. (GO ME!!)

Today is Noah's 4th skiing lesson, and he will be graduating to the chair lift. In addition to that, he's been managing his blood glucose beautifully, both on and off the slopes. (GO NOAH!!!)

On the d-tip...at the risk of sounding like a total idiot, here's the story of what happened when my mom had Noah overnight so my husband and I could go out on a hot date. Yes, a real date with a movie and dinner and staying out late and a martini...

Ok, so on to the stupid thing I did:

My mom and I were planning Noah's dinner carbs for the evening and I wrote down measurements and counts for the chicken,broccoli & ziti she was planning to make.
"Is this pasta measurement for dry or cooked"? my mom asked.

"huh? It's the same, right"? I replied, uneasily. My mother is my family's Martha Stewart, and it automatically made me nervous that I didn't have the food knowledge she wanted to hear.


"The pasta...it's 1/2 cup dry, right?" now she's grabbing her glasses and the box to check.

"Mom, I don't have a clue. It's ziti, so it doesn't change it's shape or anything so I just assumed...."
I couldn't even finish. Most of the time, I can laugh at my mistakes and brush it off as a lesson learned, but not this time. This time was about my kid, and his health. I knew that what I had been doing all along was wrong, and it hit me in such a weird way. I started to cry and got mad at myself. How stupid am I that I don't know things like that practically double in size when they cook? I thought back to all the dinners and the carbs I counted incorrectly, and felt like ...


a failure.

"Now you know", my mom said. I immediately snapped out of it. Those 3 words meant so much.

They didn't just mean "now you know", they meant: "all good moms make mistakes", and "you do a good job, you can't be perfect all the time".

Thanks mom, for saying all the right things.

Fresh Powder

I made my way in the bitter cold up to the lodge at the ski area, saying a little silent prayer, "please, in the name of all that is holy, let him have a good time with no lows".

It was Noah's first day of ski club. We planned ahead for every possible mishap and blood glucose scenario. Since the kids get on a bus and go right to the mountain after school, I sent him with a grocery store worth of snacks in his bag.

I hoped that he would remember to take his glucose tabs if he felt low on the mountain, instead of making the long trek to the lodge and his test kit.

Did I triple check his pump to make sure he had enough insulin in there, and battery life was ok?

I made my way through the gazillions of kids and adults, convinced something had gone wrong, and that I would find my son sweaty, pale and panicked from a low.

I heard him before I saw him...laughing that incredibly infectious laugh that I love so much. Standing with a friend and his teacher, skis in hand. Already looking like a pro. His smile was a mile wide, and just seeing that sent my anxiety packing...for that moment all thoughts of diabetes, boluses, basal rates, and carb counts were set aside. For that moment, I saw a happy kid on the brink of a new and exciting adventure, and that made the start of my New Year very bright, indeed.

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."