April 29, 2008

Discreet But Never Ashamed

Yesterday, I had the perfect opportunity to reinforce some diabetes care etiquette to Noah. Being the first day of spring vacation, and of course it was raining (still is), we went to a really cool place nearby to paint ceramics. We picked out our pieces. Noah chose a sushi plate and I went with a simple bowl. The place was busy and we were lucky to grab a spot, so we sat down and got creative. I knew from the past that during slower times, they don't mind if you bring a snack or light lunch to enjoy while you paint, but seeing how busy it was, I decided to ask if it was ok for Noah to eat his lunch at the table.

I approached one of the ladies working there, and discreetly but with confidence, explained that Noah has type 1 and it would be wonderful if they could help us adhere to our schedule by allowing him to eat at the table.

(Just to clarify, I'm not looking for extra special treatment. I was prepared to leave and come back after lunch time if it was a problem, but it doesn't hurt to ask. "No" is not the end of the world.)

She told us it was no problem, and smiled kindly as she told us, "you eat whatever and whenever you need to" . cool!

So we sat, painted and talked. While Noah waited for his design to dry, he pulled out his lunch bag and test kit. And yes, while the lady and her kids at the table next to us stared open-mouthed, their activity screeched to a halt, he tested his blood glucose.

He's so comfortable testing in public, he sometimes lets it all hang out, bloody fingers and all, and I have to remind him to keep it discreet. I've explained that some people don't care for the sight of blood and needles, so he should think of others feelings. I've also explained to him that even though he should take steps to shield blood from public view, that in no way ever, should he be ashamed of testing in public.

His obliviousness to the stares from the adjacent table shows me that he is confident and that he knows there's no shame in taking care of his Type 1, no matter where or when he needs to test.

April 24, 2008

I love...

I got this over at Jillians. :) The rules: Make a list of your loves. The only catch? You can’t include a single person you know on your list. No “I love the way my husband laughs” or “I love hearing my little girl call for me.” It’ll be tough, I know. But this particular little exercise is about stripping away everyone who defines you and figuring out what you (not his partner; not their mother/daughter/sister/friend) love.

I love everything about the beach.

I love lying on the floor under the Christmas tree.

I love a good cup of coffee (hot and iced).

I love consistently normal blood sugars.

I love Converse All Star sneakers.

I love maki sushi.

I love old buildings and architecture.

I love a warm cat to cuddle with.

I love learning to knit and crochet.

I love helicopter pods that fall from trees.

I love a good joke.

I love painting my toenails.

I love random acts of kindness.

I love wasabi peas.

I love singing and dancing.

I love rain on the roof at night.

I love driving with the windows down and the radio up.

I love ugg slippers.

I love flossing.

I love clean crisp sheets and down comforters.

I love baking.

I love Stephen King books.

I love Hello Kitty.

I love vintage Pyrex vessels.

I love Ireland.

I love food cooked on the grill.

I love to organize.

I love a good cry.

I love the song "Here Comes the Sun"

TuDiabetes crew in Boston!!

Yesterday, my husband Jon, myself and Noah, had a chance to meet up with Manny and his wife, Andreina (the founders of TuDiabetes and the Diabetes Hands Foundation) And Bernard, a fellow Type 1 blogger.

We met Manny and Andreina at their hotel, and after introductions, it was a non-stop flurry of excited conversation about anything and everything. It felt like talking with old friends that we'd known for years.

We decided to go see the Public Gardens (Swan Boats!) and on our way, we saw this:

Zero carb cupcakes?? They will either be a miracle or taste nasty. Off we went across the street to check it out.

I paused to take that picture while everyone else headed into the shop. In a split second, they came filing back out, laughing. " T-SHIRTS"!, they said. Well, that's one way to offer a zero carb, zero fat cupcake- omit cupcake and replace with t-shirt.

When we got to the gardens, and it was beautiful- everything was starting to bloom, and we took a ride on the Swan Boats, where Noah recorded his very first video interview with Manny. Noah thought it was super cool to be interviewed, and was happy to be on camera.

Bernard found his was to us in the park, and it was so cool to see the bond that he and Manny have. I introduced him to Noah as "the gadget man" - he showed Noah his CGMs (yes, 2 of them!) and how they worked. He really knows his stuff, and we plan to see him again at one of the pumpers meetings in MA sometime soon.

We all continued to walk and fall back into that easy conversation, and it hit me that here we were- this group of people plucked from different places geographically, but with a common bond that makes us instantly understand each other through Type 1. A mixed blessing, but a blessing nonetheless.
We stopped for a quick coffee and had to say goodbye to Manny and Andreina - I think we made them late for a meeting. (sorry guys!) We got a chance to chat a bit longer with Bernard about family, life and diabetes.

I am proud and happy to have met the most warm, friendly, smart, and caring people yesterday-we made some incredible new friendships, and Noah was given a chance to learn from people who don't just live with diabetes, but thrive with it.

April 21, 2008

Great News!!

Noah was part of a project last year to raise awareness about diabetes called "Word In Your Hand". About a month ago, our friend Manny Hernandez, founder of TuDiabetes.com, asked if Noah's image from that project could be used in an awareness/advertising campaign with LifeScan, makers of OneTouch glucose meters. Today is the very first day of that campaign.

Click to watch the video (Noah is pictured early on, and his hand word is stress) http://onetouchdiabetes.com/sharing.html

This news comes in tandem with the exciting announcement of a partnership between TuDiabetes and OneTouch which is explained in detail here.

I'm super excited about this- not only because Noah is a part of it, but because it will help bring more people with diabetes to a wonderfully helpful, educational and vibrant community.

April 17, 2008

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.

April 16, 2008

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,

April 14, 2008

Raise Your Voice for Type 1 Diabetes

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

Spring, 2005

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

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

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

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

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

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

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

I didn't cry.

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

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

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

April 10, 2008

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:

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: