It's D-Blog Day!

The topic this year is: 6 things you want people to know about diabetes. I could fill volumes with what I would like the people in Noah's life to know about his disease, so breaking it down to 6 is a bit of a challenge, but here goes.

1. Type 1 diabetes is a tough disease to manage. From one day to the next, blood glucose can fluctuate with seemingly no explanation. It could be something as simple as stressing over a math test, or eating breakfast a half hour later than usual that can send blood sugars roaming out of the comfort zone and into the danger zone. Chasing a high with a correction bolus, water and exercise sometimes just plain doesn't do the trick. The same goes for pesky lows sometimes, and it can be frustrating knowing that through all your best efforts, diabetes is essentially blowing raspberries at you behind your back.

2. A good thing that came out of this journey is the overabundance of support that's available within the diabetes OC. As the mom of a newly diagnosed little boy 5 years ago, I was pretty much lost in a new world I didn't know how to navigate. My husband and I felt isolated not knowing anyone with whom we could identify. What we needed was someone to ease our fears and let us know that we weren't totally screwing things up. We have received so much help from so many people over the years with everything from recipes, to 504 plan advice. That kind of support is priceless and we are truly grateful.

3. Insulin is not a cure. I saw this on a t-shirt once, and it has since become my mantra any time an opportunity comes to raise funds for research, or to simply answer a question for someone who wants to know more about diabetes. So much more can and will be done in the way of research. For now, insulin is what is available, and we look so forward to the day we can have a more permanent solution. I'm hopeful it will happen in Noah's lifetime.

4. Insulin is the thing that's keeping my son alive.
I can't stress this enough to the insurance company who is refusing to allow us more than 1 bottle per month. When that vial gets low, I get mad and resentful at the fact that insurance companies will practically give away other drugs that to me are frivolous (Viagra, Cialis) and non life-sustaining, but they give me crap about how much insulin Noah is going through. It's not right.

5. We're lucky to have such a constant emphasis on Noah's health and diet. I always say he's one of the healthiest people I know. We have learned how to help him make good food choices, and he has such a healthy attitude towards what he eats. We have always steered him towards trying new things, while at the same time never making him feel like any food is "off limits". He gets to have cake at birthdays and candy at Halloween just like any other kid, but he knows that it's because he makes the right choices all the other days that creates that perfect balance.

6. Type 1 diabetes is a bully and a sore loser. It tries to be all badass, throwing a high blood glucose at Noah right before bed, or surprising him with a nasty low the minute he sits down for a quiz at school. Noah is stronger than diabetes, and always manages to get up in it's face, ,bring his A game, and win in the end. What can I say? The kid is good.

Imagine doing everything you're told. You stick to the rules, learn the tricks, and jump through all the hoops. You do this every second of every day. You do this out of fear. You do it because you are a parent and you have to. You do it out of love.

Imagine doing all that, and watching your most precious blessing, the thing you've been fighting for, and caring for, and loving so dearly slip away.

I don't know them, this family that must feel like their world has come crashing down on them. The recent death of their 13 year old child caused by a rare syndrome due to type 1 diabetes is something that can't be explained away. There is nothing and no one to set blame to. My heart is breaking for Eilish and her family- prayer feels so painfully inadequate, but I do it anyway.

It's cutting right into my mother's heart. All I can do is think of Noah and my God, how will I sleep tonight?

I'm sure, along with so many others, I won't.

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.

site change

Last Night at our house...

Me: assume the position, kiddo. Which side?
Noah: the right, this time.
Me: you ready?
Noah: not yet...(deep breaths)



Me: ready now?


Noah: hold on...(a few more deep breaths)...okay. OW!
Me: honey, I'm sorry. (eyes filling up) I'm sorry you have to always do this crap.
Noah: It's okay. I have to do it because diabetes just came and got me.

Feeling the pinch

Parenting a child who has type 1 comes with all kinds of challenges. A tough one is identifying with how a high or a low must feel to Noah, because neither me or my husband have diabetes. Noah experiences some symptoms of a low blood sugar that I can see readily : shaky hands and pale, sweaty face. How he feels on the inside is a bit of a mystery to me,and although he's tried to describe the "cruddy feeling" that washes over him, it's not something I can really relate to.

Today, I got to experience a small taste of that cruddy feeling for myself. Since July, I've been seeing a nutritionist to get my weight under control. I've been doing pretty good, too. I've lost 30 lbs. so far, and have about 20 more to go before I reach my goal. Because of the weight loss, my body is a little out of whack- I used to always be hungry and I was told that it was because I constantly snacked and grazed during the day, keeping my blood glucose on the higher end of the scpectrum.

Now that I eat normally, my body no longer craves the constant flow of food, and I'm no longer always feeling hungry to keep up with that demand.
The problem is, even though I'm eating my calories for the day, I don't feel hungry enough to snack between meals at all. That caused a problem for me early this afternoon, right before lunch. I felt shaky and pretty cruddy. I couldn't think straight and became panicky. I wondered out loud; "If this is only half of what a low feels like, it SO sucks".

I grabbed a clementine off the counter, scarfed it and sat- staring at the clock on the microwave a full ten minutes.

And then I did something out of curiosity. I went to the D-Drawer and grabbed Noah's spare test kit and used it. 82 mg/dl.

I guess it's not bad for an adult, right? But all I can think of is that reading came after I ate the clementine, so I wonder what it was before?
I also can't get that feeling of confusion and anxiety out of my head. It was unpleasant and uncomfortable. I imagine my blood sugar wasn't all that low to begin with, but now I see a tiny bit how Noah (or anyone else with diabetes, for that matter) feels when a low starts. I'm amazed at how anyone going through a low can even function enough to go through the motions of a blood glucose test, let alone rummage around for something to treat the low afterward.

I'm also amazed at the fact that most type 1's test 10 times a day, because my pinky finger still hurts from the lancet. (yep, I'm a baby) I don't know how you guys all do it...all day...every day. Yeah, I got a small taste of what it's like, and it made a big impact.

Health care plan woes.

My husband's employer brought the hammer down and informed us that they are dropping Tufts Health Care...which of course is the insurance we have. It's also the insurance we love. The coverage has been great- we've never had to pay for an insulin pump, our copays are low, and I actually like talking to the helpful staff at member services (God knows they've heard from me enough over the years).
Now comes the daunting task of reviewing insurance plans. I have 3 choices- all plans offered by Blue Cross, Blue Shield.

A side note: Our dissatisfaction with BCBS is the reason we switched to Tufts in the first place. BCBS sent an outrageous bill totaling upwards of $10,000 to us after the birth of Noah, claiming we had to pay out of pocket for a c-section and 4 day hospital stay. The reason? They had no physical proof of my admittance to the hospital. Seriously? Hey, this baby here isn't physical proof enough for ya? True story.

Ok, so needless to say, my expectations that any of our options is going to offer us a vast improvement over what we currently have are lacking. There's also this scary feeling that I'll miss something, and be stuck with a plan that could possibly hurt Noah health-wise. I've heard so many stories of people with type 1 diabetes fighting with their insurance companies over coverage. What's going to happen when Noah's doctor wants to try a CGM and insurance says "no"? I wouldn't back down from a "no", but I'd rather not have to fight over it in the first place.
I understand and appreciate that we are VERY lucky to have any coverage at all. I want the best possible everything for him, and honestly, I don't want to screw this up.

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 Rain

Noah is now a camper. Diabetes camp, to be specific. Being his first time, we had no idea what to expect, but it's been the talk at the dinner table here at our house for months now. Wondering what the cabins will be like, and where all the other kids will be from? Will the food be good? What about the weather? Oh, the weather. The darn rain that has been plaguing us here in New England for the better part of a month straight put all the other worries to shame. Well, all the crossing of fingers must have paid off, because Sunday when we drove down to the camp, it was a gloriously sunny, warm, and DRY day.

No Rain.

We ambled up to the office where we could see counselors and kids milling around...some with pumps and tubing precariously hanging out in the breeze...some not. I looked at Noah, and saw his smile of understanding and recognition. Even as we went through the check in process, and he got to know his cabin mates, you could the bonds of familiarity forming.

After saying good-bye about 100 times, and taking the long drive home, my husband and I sat in our too quiet house wondering if Noah was doing ok. We recapped the day, and talked about our observations. My husband put it perfectly when he said this to me:

"Seeing Noah today at camp, reminded me of that Blind Melon video. Remember the one with the little bee girl? She danced and got laughed at...went all over the place trying to find where she fit in. Finally she found other bees doing their dance, and she was so happy. That's kind of like Noah today at camp."

Noah has found his bees.

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.

How I lost my temper

I had a mini-meltdown the last time we visited the endo with Noah. I've been in and out of varying degrees of pissyness in the couple weeks since. The visit started normally enough. Check in. Weight and height. Hand over the meter. Small talk with the nurse and off to the room.
When the doctor came in, she told us that there was a problem with downloading the information from the meter...great. I have a log book for school, and one for home, and wouldn't you know it- the school book is in Noah's lunch box at home.
So we go into pump history, and scroll through all the BG history. As I'm reading the prior 2 weeks of blood sugars, the tears start welling up in my eyes for no reason. I push it away, and keep scrolling. There are obvious issues during certain times of the day that show up to the doctor as trends once it's all on paper.

Then, the questions start, and I feel like she's grilling me. Her line of questioning was completely normal, but to me, it felt like I was under a microscope being scrutinized to death. I struggled to keep it together.

My frustration reared it's ugly head when she asked me if I had any idea what could be causing Noah's lows before lunch. I quickly shot back, "I don't have a clue- your guess is as good as mine. I mean, really, what worked for us yesterday, doesn't work for us today. Why can't things just work they way the stupid formula says it's supposed to? I'm sick of being wrong all the time"!!!

Not pretty at all. The doctor just stared at me, and offered nothing. She contributed no words of comfort or support ,which I needed to hear so badly at that point. Instead, we just stumbled through the rest of the visit.

In the end, we got some good advice and words of encouragement from the department chief (who was fetched quite quickly after my bout of verbal diarrhea). Turns out, puberty is showing the first signs of life, and Noah's BMI has increased, making his insulin needs different. I don't know why these changes have bothered me so much this time, because in the past, they've always been taken in stride. Maybe I need to let go and chill a little. I can tell you , we won't be seeing that doctor again. Something about her manner makes me feel like I suck at life, and I don't need that every time I go there.

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.

A holiday. A blackout. Another Holiday. One more holiday.

My last post came just before Thanksgiving. A busy time of year for me and my family. I thought finding time or energy to blog would be rough, but I never intended to be absent for this long. Blogging blahs aside, I'm ready to put fingers to keyboard once again with a brief recap of major events since November 20.

Thanksgiving:
2 vegans and 8 meat-eaters here in my tiny dining room.
2 dogs and 2 cats running amok, too.
Yummy sake brought by brother in law (kanpai!).
Noah's blood sugars at near-perfection all day, despite all the delicious and savory food and sweets.
Guitar Hero until the wee hours...YOU ROCK!!

December 12-18, 2008:

Ice Storm overnight.
Woke up at 2:30 a.m. to the sound of the transformer on the pole across the street exploding.
No power anywhere in practically the whole state of New Hampshire.
My neighbor and I loaded our boys in the car and drove about 20 miles round trip for coffee.
The amount of downed trees and limbs and damage was just unreal.
Pretended to be "pioneer women", cooking on the grill, lighting a fire in the fireplace to stay warm, etc. It was fun...the first day.
By the next day with no power, a cold snap had settled in, and it was unbearable to spend any time in my home.
Luckily my aunt and uncle a few streets over have a generator, and my mother came to help me wrangle all the diabetes supplies, clothes and essentials I needed for us to spend the night over there.
That one night turned into 2.
Did I mention my husband is a Verizon guy? I didn't see him for days, on account of all the repairs they needed him for. Plus, he spent the nights in our house (yes, he's crazy!) because he had heard reports of people looting copper plumbing pipes out of homes that were vacant due to the outages.
On the 5th day without power, my mom who lives across town, got hers back!! We then moved in with her for 2 nights.
I returned to my home every day, so I could make sure our pipes hadn't frozen, or that no one broke in to steal the stockpile of Christmas goodies I had bought up until that point. On one visit, my house was 37 degrees inside.
On the 7th day, I called my neighbor to see how she and her family were hanging in there, and while we were on the phone, the lights came back on, and I hightailed it back home as fast as I could.

Christmas:
Christmas Eve was wonderful. The annual party at my cousin's home was filled with all our tales of survival during the outage, and how grateful we all were to have our power back.
Jinxed.
At about 3 a.m. on Christmas morning the power went out. again.
We made the best of it, and even without the lights of the tree, we did have a cozy fire in the fireplace to enjoy.
My father in law showed up with a portable generator~ Christmas Miracle~!!!
Noah wins the award for the most patient child in the Universe...he got a Wii, and had to wait until the power came back on at 4 p.m. to try it out.

New Year's Eve:
Snow all day.
We hosted my 2 brothers in law, their girlfriends, and a few good friends.
Got Chinese and Japanese food from the place that gives you free sake bombs while you wait.
We donned funny hats and played many raucous rounds of Pictionary Man, with lots of whoopin and hollering.
The girls won! (Marie Antoinette, suckah!)
Noah was allowed to stay up to ring in the New Year with the adults.
The rest of us stayed up way too late, drank and ate waaaay too much, and had a blast saying goodbye to 2008.

So, that's where the past couple months have gone. Thanks to Rebbecca for posting the comment that made me realize how long it's been!

D-boogeyman

Noah told me he had a dream about someone coming into his room and setting his pump to give him a bunch of insulin. In the dream, he tested his blood sugar and watched as the numbers crept lower, and lower, until the last number he saw was a 5.

I asked him, "then what happened"? He replied, "I died".

I have to admit, it freaked me out so much that a chill ran through me. I thought to myself, "where the heck is this coming from, and what brought it on?" I asked him if he's worried about going low in the night, and maybe that's why he dreamed that, but he said "nah...you guys always protect me from everything".

Well, not everything, but we try.

A new day in America

"This is our chance to answer that call. This is our moment. This is our time – to put our people back to work and open doors of opportunity for our kids; to restore prosperity and promote the cause of peace; to reclaim the American Dream and reaffirm that fundamental truth – that out of many, we are one; that while we breathe, we hope, and where we are met with cynicism, and doubt, and those who tell us that we can't, we will respond with that timeless creed that sums up the spirit of a people:

Yes We Can. Thank you, God bless you, and may God Bless the United States of America." - President Elect, Barack Obama.

Yes, history has been made. This campaign has been nothing short of extraordinary, and I am grateful for being able to cast my vote, and for participating in our Nation's unfolding history.

As a diabetes community, this time of transition is more important than ever for us to be active participants in raising awareness about all types of diabetes, and to let our new President know that our goals of education, advocacy, funding research and ultimately finding a cure for diabetes is of paramount importance. It's been proven that we can be heard. Our dedication to our cause can and will be recognized. November is Diabetes Awareness Month, and in just nine days, we will be celebrating World Diabetes Day. I implore us all to take the momentum of change and run with it, by writing, talking, and through our actions.

We have been witness to what can be done when you have a dream...an idea that is given a chance to flourish, and a desire for more than the status quo. It certainly is a new day.

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?

Abandon Ship?

This subject has come up since day one, when the pediatrician sent us into Boston's Massachusetts General Hospital, we've been asked a million times since that day..."why not Joslin, aren't they the best"? My response is always the same "we went where they told us".

Sounds lame, but we were newbies in the world of type 1 diabetes, and being led on a medical leash was actually a welcome thing in a life that felt like it was spiraling out of control at that particular time 3 short years ago. MGH has been good to us. They taught us a lot. Got us through the "boot camp" phase of parenting and clinical care of a newly diagnosed type 1 child. We love the staff there, they are always available to call you back if there's a problem, and we are incredibly blessed and lucky in geography to be a stone's throw from some of the best medical facilities in the entire country. (wait for the big "but")...

BUT, It's an adjustment when the doctor we've been working with, and getting to know is suddenly gone. Being a teaching program, Noah's on his 4th doctor in 3 years. This past Friday, it happened again. When Noah's name was called, it was by yet another "new" doctor. Introductions and small talk were made as we snaked through the maze of hallways on our way to the exam room. Jon, Noah and I took a collective deep breath and entered .

She was nice enough, I'll give her that. But zero bedside manner, and to me- especially when the doctor is working with children- is a huge problem. As she rifled through tons of paperwork, looking for the one with Noah's pump history printed out on it, I could feel Jon tense up as he sat beside me. She positively grilled us, which is fine- we got a weird feeling from the manner with which it was done. Later, over lunch Jon and I would discuss how we felt like we were in trouble, sitting in the Principal's office , afraid to say the wrong thing that would surely result in detention.

I dunno, it just felt bad and uncomfortable. And they didn't DO anything. I feel like when we speak about certain issues or concerns, there's no feedback. It's frustrating because even though we've been in this life for three years,we know there's always something new to learn. That being said, don't you think some new information, or helpful advice would be offered up from time to time? yeah, I thought so too, but it doesn't happen there. It's situations like Friday, and the switching of doctors over the years that have us wondering if a change from MGH to Joslin might do us some good.

I've always been the kind of person that hates to rock the boat, I don't ever want to offend anyone, but this is my kid's health- heck, his LIFE, at stake here. Why not expect the best? Why not leave no diabetes stone unturned? As parents, I feel we shouldn't allow ourselves to get complacent. We're going to get the wheels in motion for the long overdue switch to Joslin. I'd welcome any advice on what to expect from those of you who have had to break ties with a doctor, or switched from one hospital to another.

On a side note, we had a really great time in Boston after the appointment was over. We did the Boston Duck Tours. It's one of those touristy things you have to do at least once. It was the perfect day for it, and it was educational and fun. Noah even got to steer the duck boat!

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?

Yesterday at CVS

Noah animatedly bounces ahead of me, the Tigger to my Pooh-Bear. "Mom, I need mouthwash", he says, brightly.

He grabs his brand as my hands are already full with a few womanly necessities (tampons?- check! razor blades?- TEN BUCKS!!).

Bounding ever further away, he rounds the corner by the pharmacy and stops at the display of the varied blood glucose meters on the shelf and pokes at the buttons.

I finally catch up, still grumbling to myself about the outrageous cost of personal hygiene products, and say to Noah jokingly, "looking to trade up"? We both laugh at our inside D-joke, as a man that was waiting nearby for his prescription interjects,"hey buddy- those aren't Game Boys" (chuckle, chuckle).

I saw a flash of red, and instantly calmed my instinct to snap, "thank you, but he knows that all too well". I smiled and bit my tongue.

Without missing a beat, Noah answered him with, "those are blood glucose monitors, and I'm type 1 diabetic- I have an insulin pump."

The man smiled kindly at Noah and replied "you are very lucky". (chuckle, chuckle again)

I honestly don't know why, but hearing him say that enraged me. LUCKY?! I wanted to scream, "sure, buddy!! If you think lucky is a fucking busted pancreas out of the blue at age six , lancing your fingers until they bleed 10 times a day, having to be woken out of a sound sleep to choke down a juice box, shots, long needles inserted into your ass for a site change every 2 days, cutting activities and recess and sleep -overs short because of site problems and crazy blood sugars, feeling like you're so different from everyone else even though everyone tells you you're not but you're 10 years old and no dummy, yeah if that's lucky, then he's the diabetic with the pot o' gold at the end of the fucking rainbow."

Instead, with my eyes full and shimmering in the fluorescence of CVS, I smiled in return and lied, "yes, he's very lucky"

Is Barney in charge, here?

We all love the Deltec Cozmo pump. It's super easy to use, and making adjustments is as simple as programming say, a cell phone.

In 26 months since the Florida Incident, we've had zero problems with the pump, until the other day Jon was doing a site change, and noticed a crack in the pump casing. It hasn't affected the way the pump works or anything, but we don't disconnect Noah for swimming, or the beach and that crack would let water in for sure.
I made the call to Smiths Medical, and arranged to have a replacement pump in slate grey sent here next day air.
It arrived yesterday and you would have thought Santa came early! Noah hopped around the kitchen while I undid the tape on the box to reveal...

A purple pump. wah-wah-waaaah.

I had to laugh, because Noah looked so comically offended. His face was a priceless mix of confusion and dibelief that the Cozmo people had overlooked the fact this pump was meant for a macho boy of 10. Even when I called customer service, the nice woman I spoke to chuckled, and said, "oh no, he got the "Barney Purple one"!

Much to Noah's relief, a new pump in a color more suitable to him is on it's way.