I Dare You... (JDRF 2011 Dinner)

I am a firm believer in the phrase "Everything happens for a reason."  I have met my share of people who disagree with this for whatever reason, but myself, I think there's something to it.  I also believe in the power of a full moon and the ebb and flow of the tides.  I'm not necessarily a spiritual person, or a religious one, but I have certain beliefs about things, and I stand firm with them.

Sit down--this is a long one....

It's no secret that I had my oldest at a young age.  An age that she is approaching, and fast!  I was just 18 when I gave birth to this delicious little 7 pound 10 ounce baby doll.  I had NO idea what I was doing, even though the years of babysitting had taught me many things.  Having your own baby who wakes you in the night, who relies on you for everything except their own breaths, and who hold you accountable, without their knowing, for their life and future...What a responsibility for a teenager.  I recall many comments, many gestures, and many looks from people as I weaved my way through motherhood those first few months, essentially alone, trying to figure out how often to breastfeed her, how much wetness and musturdy poops a pamper could hold, which immunizations to give and when, whether to let her cry it out or not...  So many things for a young girl.  I should have been thinking about what party to attend and with whom, and maybe thinking about colleges.  I think about Hayley at 17.5 years now and wonder if she had to could she do what I did?  Of course the answer is "yes" but I wouldn't wish it on any teenager.  It wasn't glamorous in the least. 

One day, my mother called me when I was about 7 months pregnant and asked me to stop by her house because some mail had come for me.  When I arrived, she handed me an envelope addressed to me - no return address, and handwriting that was unfamiliar to me.  Inside was a handwritten note wrapped around two $125 gift certificates to Babies R Us.  The note was short and sweet, wishing me luck with my new baby, and offering me these gift certificates for pampers, onsies, burping bibs, linens, and anything else I might need.  The note was signed, "Your Guardian Angel."

To this day, I do not know who this Angel is. 

I think about that gift often.  It was unexpected, unforeseen, and it lifted my spirits so high I can not tell you.  I was in a place in my life where I wasn't working, I had no money, I was living in random places and didn't have a place to call "home" to bring this baby I was carrying. 

No pity party.  I made my choices.

And everything happens for a reason. 

I would love to know who this generous soul is that brightened my day and made me cry and gave me a glimpse of hope that everything, somehow, would be OK.  Somehow.  The reality is, I probably will never know.  I understand this. 

This instance has had a profound impact on how I live my life since with other people who need assistance - whether they ask for it, or know it or not.  It can be a friend having a bad day who comes home to flowers on her doorstep, or a family who just had another baby and organizing a meal plan...  What goes around, comes around.

Russ put into motion and took off flying with a month long fundraiser for Betsey for research for a cure to type 1 through JDRF.  He put jars on the counter in his restaurant for pennies and nickels and the occasional dollar or 2. He enabled Betsey & I to manage a table at the local farmers market to sell our baked goodies and offered lemonade and iced T and gift certificates from his restaurant. He solicited shamelessly for my girl, donations for our silent auction for the benefit dinner, and he sold out all the tickets for the dinner  - and to top it off, he cooked the most fabulous meal for 45+ people, timely served and impeccably presented and filled our tummies with absolute goodness.

Russ is a man with a dirty mind, quick wit, nasty jokes, scrumptious baked goods, a delightful wife, 3 spunky boys that he loves more than vodka drinks, and a zest for what matters in life that is like no other.  Russ is a man I met a little over a year ago when we frequented his restaurant, right down the road from our newly purchased peiceofshit house that we were....are...still renovating.  I would walk the children down last summer, faithfully, every morning, for coffee and breakfast, sometimes nibbles for lunch, and always an afternoon coffee.  I was his best customer last year.  For anyone that knows Russ will agree, he has a heart of gold and a great sense of humor.  What a lot of you don't know, is Russ is the most sensitive men I know.  And he'd be the first to admit it.

He loves to love.  He loves to give.  He loves to make people feel good.  He loves to see people smile.  And he does whatever it is he does, out of the goodness of his heart. 

No strings attached. 

This is a rare trait in a friend. 

Giving out of the goodness of your heart.  We should all take a lesson from him.  The world would be a better place.  What he has done for me for this ride, is almost too much for me to put into words...

I recently had some therapy sessions to figure out the ways of life, my life as of late, and in one of the sessions, the councilor brought up my children.  She asked me about them.  I went through the line up, discussing briefly all of them, highlighting the "who they are."  She came back to Betsey.

"Tell me about Betsey.  Tell me about her diabetes.  How does that affect you and your life?"

We were about eight minutes into the hour long session. 

For the next fifty-two minutes, I poured my heart out to her like I had held some kind of secret since March 13, 2005.  

She just sat.  And listened. 

I should have offered her a cocktail.  She probably would have brought one if she knew what Pandora's box she'd be opening by asking.  But even I didn't know.

Betsey's diabetes affects everyone around her.  Its a constant reminder that, to live, she has to do certain things.  Her siblings are inadvertently aware, her friends are plugged in, her father is in the thick of it, and her mother breathes it with her day to day, hour by hour, minute by minute ... I didn't realize until this one therapy session just how much it affects me.  I don't like to let on.  I'll discuss and answer questions and educate when necessary, but the truth of the matter is, it eats me alive.  It is the heaviest component of my life now, and probably forever will be.  As it is for Betsey.  This is her life.

I knew Russ was doing this fundraiser because we had he and Gail over for dinner and we discussed it. That is the only difference in the story between Russ' story pertaining to me and the Guardian Angel that sent me the gift certificates for Hayley as a baby.

The idea is the same.

The meaning is the same.

The thought is the same.

The feeling is the same.

The sharing of the goodness in the heart is the same.

Russ Marchello is an angel in a bald, red haired facial disguise.

My JDRF Ride to Cure, 2011, is sponsored by Paperback Cafe.

On Tuesday I will make a donation to my fundraising page totaling the enitre amount I need to raise to ride the Tuscon, AZ ride!

I am looking into having a shirt made for me that says my ride is sponsored by Russ and his efforts. 

It means more to me than I can ever let on... for then, my soul is exposed.

Russ...  Thank you.  Thank you to you and your staff that offered to volunteer their time to help make the spectacular dinner that night, and to the band who played sweet tunes all night, and to the all of the people we know and we didn't know that bought tickets to support Betsey and my ride in Arizona... From the bottom of my heart... for your efforts, for your love and support, your dedication that surpasses most people's intentions, your endless ideas and compassion,  and especially, your morning glory muffins - which are to-die-for.

Speedo & I, Betsey & her siblings, we are forever grateful for your unconditional kindness.

You have no idea.  I dare any of you to be as giving as Russ... I Dare You...

xoxo

Here is a slideshow from the Benefit for Betsey & JDRF that Russ held at Paperback.  Click "full screen" and turn your volume up!

Happy is Good.

Whew---  Back from the Jersey Shore vacation and on to the next adventure!  

I've officially signed up for a 109 mile bike ride in Tuscon, AZ in November! 

What the heck am I thinking??!  I hate flying.  That's a long flight.  Omg!

I owe the push and encouragement to Steve Berube, a friend of mine and also a fellow parent of a diabetic.  Steve was instrumental in helping organize the Burlington VT ride a few years ago.  I have wanted to do more rides, but the effort involved in the fundraising is quite extensive, and honestly, my time is even more limited now than ever.

A couple of months ago, Speedo and I had our friends, Russ & Gail over for dinner.  The undertone of the get together was to establish a fundraising idea brought up by Russ, who is the owner of a delicious local cafe in town. In weeks prior, I had discussed with Speedo about doing another ride, and of course Steve was diligent about reminding me why we do this, about our kids, and gently encouraging me.  Russ and his wife Gail knew nothing about my possible excursion across the country and my reservation about signing up for a ride.  When Russ initiated a possible fundraising idea, and mentioned diabetes, my spirits soared!

I liquored Russ and Gail up with some summer martinis and we feasted on enormous grilled cheeseburgers and for dessert, coconut gelato with raspberries doused in chocolate sauce.  Yummy.  And then we discussed business.  Russ shared his ideas with what he wanted to do, and when he finished, I explained my stance.  I could and would do the ride in Arizona, IF I felt I could raise the funds and he was offering to aid me in doing so.  It was perfect timing, perfect circumstances.  A perfect evening that wreaked of hope.

The fundraising is a major issue for me.  When I did the VT ride, I sent out a mass email on the anniversary date of Betsey's diagnosis.  I linked this blog to the email; I had just started it for fundraising purposes.  I included Betsey's diagnosis story.  I wanted my audience to know and understand the emotion behind what I was doing, the efforts I was going to put forth in raising the funds needed to ride, and the reason WHY I felt inclined to do so.  I still to this day, can not get through reading my own words about the day we ended up in the hospital with her.  I'm there all over again, and despite the time passed, I can not get used to the hurt and the feeling of despair that came with those days.  

We've moved on.  We've learned SO much.  We've jumped hurdles and crawled lower than low as we have tried to figure out the forever sugary sweet numbers that flow through Betsey's blood.  It's not a death sentence by any means at the rate we are going.  There are far worse things.  There are children who don't have legs to ride their bikes, or strong hearts to help them run fast, or healthy lungs to breathe in the fresh salty air.  I get it.  This is no pity party.  But this is my life. 

This is Betsey's life. 

 I'm not a throwdiabetesinyourface girl.  But, because I'm doing another ride, I'll blog some more, hopefully more often, and let you all know what we are up to.  I feel its crucial for those who donate so generously to know that their money is going to a good cause.  And it's a cause for my girl, Betsey.

Things are underway for my ride.  Money has been raised.  More than half of what I need, and no thanks to me.  Russ is the king of fundraising and soliciting.  He's doing all the things I could never.  And he's doing them so well.  Through his restaurant, Russ has set up cans on the counter for cash and coins for a collection, he has facilitated a table at our local farmers market in town where Betsey and I have baked goodies and sold them, all for the fundraiser.  And the biggest event is this Saturday at the restaurant!  Russ and Gail are hosting a benefit dinner for Betsey and JDRF.  Ticket sales are abundant!!  There is going to be live local music, a silent auction with some incredible donated items, as well as complimentary wine for all guests courtesy of Cafe Routier!  Some of my children are busing and waiting tables, hostessing, we have Speedo in the kitchen with Russel the love muscle....  I'll be running the wine table.  ;)

My heart is full.  I love that feeling.  I am elated with the turnout, the generosity, the understanding and the empathy.  I can not express my thanks enough....   Those of you who are making my heart swell, you know who you are. 

I am so happy.

And Happy is Good.

Dear Me...

I am in school now, part time, 3 days a week.  I'm working on getting a certification for Medical Assistant.  I LOVE school.  Perhaps because I never "did" school before, or perhaps because I love the idea of having a bunch of books about medicine and anatomy and physiology around to poke through  at my leisure.  I've always had a love of medicine; a fascination if you will.  Medical Assistant is something to start me off.  I doubt it will satisfy me for long, but the homework load now, the commute to and from school, and everything in between is enough for me right now.  As my friend Jen says, "My dance card is full."

This term I have a business writing course.  Thursday night's assignment in class was thought provoking.  The instruction was to write a letter to ourselves, post dated two years from the current date.  What was life going to be like?  What were key points in our lives that would be highlighted that we would focus on?

I knew what mine would say right away.  It took me less than 25 minutes to write it.  Boom.

Dear Me,

As I sit here with my Grey Goose Martini, stirred, up, with a twist, mind you, and I reflect on my day, the sun is setting and the sky has a beautiful orange and red glow. I often wonder how I managed to let the last two years go y me so quickly and with so much substance.

My oldest child is styling hair in New York City at a fine Salon, living the life only a single girl could.  This is the place she belongs, and she has excelled in ways I knew she always could.  My beautiful daughter Libby was nominated by her peers as class president in eighth grade.  This has sent her self-esteem soaring!  My handsome and only son, my favorite boy in the entire solar system, Tucker, has progressed so well in lacrosse the last two years that scouts are fighting over him at games on the weekends.  Talk of scholarships at Ivy League colleges are buzzing.  The two younger girls, Greta and Margot, have successfully finished and started elementary school, respectively, and I am starting to see the end of elementary years in sight.  They are happy.  they laugh and giggle and sleep in the same bed still.  What more can I ask for them?

My handsome and driven husband, who has worked so hard for himself and our family over the years, has started his own business.  His life changed when a business proposition fell into his lap, literally overnight.  His lifelong dream has come true; so well deserved.  "3 Minutes of Ecstasy, The Perfect Pop Song," his own music store on Main Street has blossomed with substantial customers and a wonderful following of supporters and patrons.  Life is good.

Myself... I finished Medical Assistant school at Branford Hall.  I had a great time and studied with a diverse group of gals.  Our monthly meet ups at Eli's on the Hill were just what we needed to bond as we did.  My intention when I finished a few months ago was to take all the offers friends and acquaintances gave to me and dive right in.

But I didn't.

For about a week now, I haven't done anything.

Today I sat.  I sat outside... I sat inside.  Five of the six children were in school.  I had coffee on the front porch after a beautiful seven mile run early this moring with my girlfriends as the sun rose over Long Island Sound.  I watched the community pass by my house; walkers, rollerbladers, runners, cyclists... all enjoying what the weather had to offer.  The morning sun warmed up and I had a second cup of coffee with a fresh-baked scone.  As the day went on, I changed my sitting locations.  I didn't answer any phone calls or do anything social.

Today, I cried.  Yesterday I cried.  And for days before that, I cried.

But not in a sad way.

My tears through sobs are tears of pure joy and happiness.

You see, Betsey is cured of diabetes.  Yale discovered a cure and set it into motion with our daughter as one of the case studies for the cure.  Because of this, she no longer is a type 1 diabetic.

Betsey doesn't have the crutch that, for over eight years, dictated her life.  She doesn't have to count carbohydrates every time she eats and calculate a mathematical equation to determine an insulin-to-carb ratio.  She doesn't have to worry about hospital runs when the stomach bug comes through our house.  She doesn't have to worry about forgetting to change her pump site on the third day for fear she'll have high blood sugars over night and wake up with ketones, sick and dehydrated.  She wears a dress now, beautiful as ever, but with no visual appearance of an apparatus bulging out of her side.  She can have a cupcake at a friend's birthday party without thinking twice about it.  Her little fingers have healed over from the hundreds of thousands of fingers stick pokes that she was require to inflict upon herself over the years to obtain blood glucose readings.  She can frolic at the beach, not worrying about sand in her injection sites becoming infected  She can swim in the ocean endlessly on a hot summer day until her extremities are pruned.  She can decide when she wants to get out, just because she wants to.

So I cry because I am happy.  I cry because something I have hoped for since March 13, 2005 has come true.  I am relishing in the freedom my sweet girl now possesses.  I can sleep through the night for the first time without worrrying about whether or not I'll get a good morning kiss from her sunny self because I know I will.  Because I know diabetes won't take her life as she sleeps, and she will have the promise of a new day, every day.

Bubbles and Ketones

I think Spring has arrived.....really. Yesterday's weather was so unbelievably lovely in CT, it made me want to exercise ALL day! Of course, that's just not an option, but the feeling was there.

Betsey had clinic yesterday and Speedo came with us for the first time! Its good for him to know and see and listen to what the appointment is all about. I always get something from the appointments myself; always a new tid bit, or a helpful hint, or some new information about upcoming products. Plus, I love the fact the doctor we meet with is also a diabetic and wears the same pump and CGMS as Betsey. I see Betsey light up ever so quietly when the doctor discusses "stuff" with her; a common ground between them, a connection that they have amidst the rest of us in the room. They get it. They get each other.

Betsey's A1c - remarkably - was down from last visit! Again, shocker. Every time, I kid you not, every time, I am surprised by what it is. Betsey had gone off the pump sometime mid-February, and was doing shots since then up until about a week ago. There are so many variables with shots, so many less convenient ways around diabetes... But in Betsey's eyes, it's a break. A break from a needle in her bum, a break from wearing a beeper sized apparatus tucked here, there and everywhere. So we welcome and accept that And we go with it.

Betsey is back on the pump, and things were going just OK a week into it. We made some adjustments to her settings at clinic; her clock had flipflopped the am/pm and so her basals and insulin:carbs were off because of it. A note to self: when restarting apparatuses with time features, always check settings prior to use. OOPS!

I have said to others with children with diabetes and others in the general population.... when you least expect it................. when things have been cruising along, you get slammed.

I went to my crossfit class at 5:30 this morning, and was about 1/2 way through the workout and my instructor came over to me and yelled in my face over the blaring heavy metal music, "YOUR HUSBAND CALLED. HE SAID SOMEONE IS SICK!"

"It's Betsey," I said. I knew. I flew out of there.

Her sugar was hovering 500 mg/dl. Failed site. No insulin for quite some time over night. She had been high for hours. I made some coffee. She sat on the couch moaning, until the moan turned into a call for me to come and help her. Time to walk to the bathroom.

Throw up cycle one. We only had 2 today.....

Ketones were definitely present, though I didn't have her give me a urine specimen to check to see the levels. I just knew. Speedo had given her a shot before I got home, Betsey had changed her site, and then I overhauled their whole plan in an attempt to get her sugars down and flush the ketones in my overbearing, controlling mind.

The day was a-wash. Betsey stayed home. Her sugars stabilized by afternoon, but she was not even close to being able to go to school. She was tired. Not tired. She was wiped. We gallivanted around town, doing the things I do on my Wednesday free days - I am childless - happy to have her along for the ride. She's such good company, though today, she spoke little, and smiled even less. :( We packed a bag and relished the itty bitty bits of sunshine and the warmth the day gave us and sat at the beach for an hour. Just us. No talking, except for my random 'Mr. Sun 'songs when the fog and clouds destroyed my Vitamin D absorption.

It was a ketone day.

I hate ketone days.

Betsey hates ketone days. Luckily we don't have them too often and we manage them without visits to the ER. And calls to Yale. Bonus.

Back to life as we know it tomorrow, minus ketones.

Full Moon

(Lindsey, Meghan, Erin & Betsey)

It was a full moon last night! When a full moon happens, in this house, a number of things take place. Children act up, blood sugars seem to be a little funky, mood swings are a-plenty, fiestiness occurs. It's a love/hate for me. Full moon brings higher than normal high tide. I drive the water loop and soak in the salty smell that's abundant because of the excess water and the sounds of the ebb and flow are music to my ears; calming to my soul. The flip side is the quirkiness that comes with a full moon. Emotion. Lots of it. And usually enough to test your patience.


Betsey had her diabetes check up yesterday at Yale. An event I always look forward to, though nervously like a student preparing for a test. I love getting that hemoglobin count and seeing where we fare with diabetes control. For Betsey, it's more of a moment of being put under a microscope and measured by blood sugar numbers, basal rates, and testings per day and ratios, and sensitivity levels...... So much to think about to regulate a little person's growing body, on top of being a teenage girl. Who needs that crap? And on the eve of a full moon none the less.


The appointment went well. Her A1c is up a smidgy, 6.9 -- still below 7% which is where I want it, but hovering that fine line. Dr. Jen slipped in the number amidst conversation and was pleased with it...... I gave Bets a love tap on her arm and said, "Good Job, Betsey, See, still below a 7--that's GOOD!"



But I could see it. Her beautiful blue eyeballs. They were welling up.


"Its a little higher than last time," I said, "But still good Bets!" She nodded.


I knew. I could just see her body language. She loosened her posture and I could feel her slouch. This is a girl who loves getting extra help for classes so she can continue to make High Honors; Honor Roll isn't enough. I can't fault her for this, however, there is an incredible stress that comes with this. Expectations set too high and the result is often disappointment when it shouldn't be.


When Betsey cries, for whatever reason, it is a rare occasion. She is so head strong. So determined. So driven. She prides herself in keeping a stellar poker face. She smiles and it lights up the room. She laughs and its like an infectious disease. Its loud. And boisterous. And happy. And from her tummy. And few see this side of her because she's so composed most of the time. So when she cries, it's heartbreaking because it evokes a very deep emotion. Not a skinned knee. Or a hurt feeling from someone leaving her out of something. Or a bad grade. Or a dispute with friends.


This is her life. This is the path she's paving right now for her health for the rest of her life. This is BIG.


One time a boy in her class saw her testing. He made a face and proceeded to go on about how "gross" she was. It was "gross" that she had to poke her finger and bleed like that. "So gross."


That little shit wore her down. Just a few words. So hurtful. So disgustingly painful. She came home crying. She was so hurt.


I wanted to go beat that boy up myself.



It takes a good punch to get Betsey's tears rolling. Yesterday's appointment hit her hard; whether because she was disappointed with her A1c, the reality of the fact that whether or not she boluses for food and tests often DOES make a difference, or just the magnitude of the entire diabetes thing.



Maybe she's not testing enough. Maybe she should bolus for every thing she puts in her mouth. Maybe she should test before and after gym once in a while. And shucks, maybe even wear that sensor on her once in a while to see where her blood sugars are all through the day and night. Then we can fine tune. Better control.


Ohmygosh, so much for a 13 year old.


She was quiet on the ride home. Didn't say more than probably ten words. Then I dropped her off at school.


I love her.


I love the whole person she is. Even though she talks back, non stop, and tests me, and questions just about everything I say, right down to her math homework even though I know I'm right; she brings a feeling of hope. And goodness. And reality. And she's so vivacious. Her personality when allowed to break through her reserved shell is so energizing!



Her visit to Yale yesterday did its job. It gave her a glimpse into the reality of what she needs to do, day in and day out, exhausting as it may be. She's doing it. And doing it VERY well. And she should be commended for having such outstanding control while taking on such an enormous task at such a young age.



I'm proud of her.

Meghan Thoughts....Interrupted

(Betsey with her cousins from Florida Callie and Macklin at Christmas)

Often times I plug away at my daily grind, aware of all my children and their whereabouts; be it at school, home with their daddy, or at friends' houses and I don't have a constant worry. There can be hours I go through my day and not think about blood sugars and how to better them and the daily duties of diabetes for Betsey.

I never, ever thought that day would come.

Ever.

And I selfishly like those hours of uninterrupted thoughts that tend to lend my mind to more "Meghan-specific" things like: When will I sit and sew again? Or, I can't wait to start school next month! Or, I wonder what I'll do on my Free-Friday this week?!

Meghan thoughts. Not Mommy thoughts. But thoughts for Meghan. Which hasn't happened in such a long time. 17 years really. And I like it. It's pleasant. And refreshing. And invigorating. Much like a shower after beaching it for 3-4 days straight sans showering - a secret love of mine.

I received a phone call today. The voicemail left for me was eerily similar to the voice I hear that I had almost 6 years ago now when I left a message for another type 1 mom after Betsey's diagnosis.

Panic. Fear. Disbelief. Sadness. Loneliness. Emptiness. Confusion. A sense of losing it. Any minute. On the cusp of falling apart.

A local mom called me because she had just left the hospital with her daughter, newly diagnosed type 1. Devastating.

It flooded back the feelings and emotions that I went through when Betsey was diagnosed and I actually logged on to re-read Betsey's diagnosis story. This mom was so fragile, just as I was. Her voice and her words were me, completely, as I tried to navigate my new world with diabetes in the forefront, knowing nothing. All the information the hospital tossed at me went in one ear and out the other because my main focus was survival. Survival for Betsey. Survival for me. Survival for my family.

I cried on the phone with her. I felt somewhat foolish and unguarded, but I couldn't refrain. Those few weeks trying to dissect diabetes and how to deal with it, were emotionally and physically exhausting, and talking to this Mom brought it all back. It's never far. My recent "Meghan Thoughts Moments" are great, and almost a vacation from my real life, but every once in a while it's reeled right back in and the emotion never gets less raw.

Diabetes Sucks!

It's always good when you can give it back. I feel fortunate that someone can reach out to me, as a mom with a child with diabetes, to commiserate with. To ask questions to. To reach out to. It's all I was looking for when Betsey was diagnosed. It's vital to your mental health. Your soul.

Just as I've realized my recent "Meghan Thoughts Moments" are. Good for my mental health. Good for my soul.

So with this, Christine - I want you to know, it'll be OK. And your daughter will be fine. And you will live again. And she will too. And oddly enough, you'll probably cry more than her. And that's a good thing. And I'm here for you.
xoxo