I don't even know how to lead into this story, so I'll just blurt it out. We've been going through a lot here at our house lately. We recently found out that my husband has a brain tumor. His team of doctors are confident it's not cancer, and that they will be able to remove most, if not all of the tumor. He did a week-long stint at MGH in Boston for extended EEG testing a couple weeks ago, and now we wait for a surgery date. During this time, Noah has had some crazy blood sugars and I'm pretty sure the stress and worry about what's going on with his dad is a huge contributing factor, so I'm trying my best to be extremely positive.

But really? I feel like a swimmer caught in the undertow. I honestly don't know how to take on this much.

I don't know how much time I'll have to blog, but I know it helps to have a place to vent it all, so I may just be a little blogging machine. We'll see.

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.

Happy Camper

Noah busting a move at Dance Night

On Friday, I hopped in the car with Jon and my mom to fetch Noah from his 2 week stint at Camp Joslin. During his time away, we received just one letter written on his third day, stating that he didn't think camp was for him, and that he was very homesick. Oh boy. I tried not to overreact upon reading that, but every day of camp that went by, I anticipated a phone call from Joslin, and was releived at the end of the day when no such call came.
It didn't help that we missed him like crazy, too!

When we arrived at camp, we wandered from the dining hall to the cabin, looking for Noah. He wasn't sitting there looking all forlorn, waiting with his luggage, like I had imagined. We had to have him paged over the loudspeaker, and as he rounded the corner of the main office I could see the sheer happiness on his face and I knew the two weeks had become a turning point for him and his life as a kid with type 1.

There were hugs, we met a couple of his new friends, and heard a ton of stories
- he even lifted his shirt to show us the new site for his infusion set - something I could never get him to do at home. Through it all, I noticed a new confidence in Noah that had not been there before. He loved camp, and has already started talking about next summer.

Now that we're home and the normalcy has returned to our routine, that happy confidence is still abundant in Noah. So much so, that when it came time to do his site change, he surprised me by taking the reigns and doing it all himself. Drawing up the insulin, tapping out the bubbles, loading the pump, and doing the insertion like a pro.

I'll never be able to put into words the gratitude I feel towards the amazing doctors, nurses, staff and councilors at Camp Joslin. Just like Noah, I can't wait till next summer.

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.

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.

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.

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!

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?

Goodbye, Professor

Even though I was not a student of yours, you taught me so much.

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.

Frozen with fear.

My way home from the gym takes me through the center of town, past Noah's school. Every day, as I drive by, I say a little prayer for a good day for my son. I think about him and hope he's doing OK. Like the movie Groundhog Day, the routine doesn't change. I go home the same way, see the same familiar homes, and make the same wish. Every day.

Today, it was the lights of the ambulance I saw through the rain, as I made my way up the hill towards the school. As it sped toward me, I pulled over and at once my shaking hand went to my gym bag to fish out my cell. My mind was reeling.

It was coming from the direction of school.

Oh God, please don't let it be Noah.

Where's that damn phone.

My searching hand found it's target. I hit the button on the front of my LG to see the familiar picture, and no messages. For good measure I flipped it open and called my home voice mail too. Empty. Thank you, God.

I was completely pulled off the road by now. I put the car in park and wept with my forehead on the steering wheel. The feeling of helplessness and panic that overcame me when I saw those lights was replaced by relief. After a minute, I lifted my head and saw I had pulled over right in front of Noah's school.

I said a little prayer for a good day for my son, and drove home.

Cool little product found in my local Wal-Mart.

Wal-Mart is a necessary evil in my life. I despise that place, yet I found myself there recently.

On a Saturday afternoon.

The plan was to get in (just TRY to block out that screaming 3 year old), pick up a few much needed things (toilet paper and sunblock!), and get the hell out (check-out lines stretched all the way to the Mass. border) with my sanity intact and maybe with some gas money to spare.

That's when, with my hands full, Noah begged me to go down the aisle with the "beach stuff". Juggling our loot, and with the check out in full view, I sighed heavily, and bid adieu to a quick getaway. "On to the beach stuff", I wearily exclaimed.

Amid the insane amount of swimmies, sand-castle making buckets and shovels, and a gazillion towels emblazoned with Iron Man and Hannah Montana, were these cool little things:



They are meant to protect your keys, ID, cash, or small cell phone from water at the beach or boating. I tend to D-purpose items not specifically created for diabetes, (Noah wears his pump in a cell phone case at night)and saw this case as the perfect place to stash some strips and meter. Although nifty, it's not very big, so I bought 2. They do sell bigger versions of these at places like EMS- I got my dad one for kayaking- but at just under $2.oo apiece, these were a great bargain.

Even if I did have to go to the 7th level of hell to get them.

My Mother's Day Surprise

Me & my girlie cruiser.

Noah told me he and my husband miss me when they go on their bike rides, and now I won't be left out!


I hope everyone had a wonderful Mother's Day yesterday!

Talking Type 1

Find more videos like this on Tu Diabetes - A Community for People Touched by Diabetes

During our meeting in Boston with Manny and Andreina from TuDiabetes, Noah gave a little interview on the Swan Boats. He talks about life with Type 1 diabetes.

We spent the day on a movie set.

It's not as exciting or glamorous as the title suggests. This vacation week, we've planned little day trips, and yesterday Noah chose to visit his perfect paradise - the Lego Store at the Burlington Mall (in MA).

We entered the mall through Macy's and it felt like a Twilight Zone episode as the realization crept up on us slowly, that everything surrounding us was dripping with Christmas Decorations. What the...!?!?!


Then we saw the sign:

It was really cool to see a little bit of Hollywood magic, even though we didn't see much action or any celebrities.

Oh, and on a health care/ diabetes note:
Look what they had on the wall in the restroom. I had never seen one outside of the doctors office, and thought it was really cool that it was available to people.
Maybe it's because I have a public bathroom phobia and try not to visit them unless it's a dire emergency, but this is new to me! (And maybe a little too exciting- I mean, I took a picture of the thing! )