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?

Make your own!

(click picture to make it bigger)
Wordle. Go there and be creative.

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"