Site Change

Every 3 days we change Betsey's infusion set, which she currently has in her bum. The site lasts for 3 days before it gets "tired" and the insulin flow may diminish or just block all together. Sometimes if we're even 8 hours late, meaning we were due to change in the morning but waited until before bed, she'll go high - pushing 300's for no reason, and I just know it's the site.

Ever since Betsey has been on the pump, I have been the one to change it out... just because. Bets is more comfortable because she thinks I can just get it done, I know what I'm doing, it's all business. On occasion Speedo has had to do it.... one time I was away in Florida, one time it was an emergency change... but I'm on the phone walking them through it. (I also have a smidgy bit of a control thing going on, too...) Even at school, I'll race down there and change it if need be.

It makes Betsey wince when we get ready to do it. She shudders. She closes her eyes. She makes a funny noise. She'll even giggle sometimes. Sometimes she says, "wait...wait...wait...ok, go...no WAIT....wait...alright....no, I'm not ready, hold on....." I'm embarrassed to say I have not inserted one in myself to "understand" the pain. I know I should-what is my hold up? Why am I such a wimp when she is so stoic and brave??

I have tested my blood sugar with that little poker that feels like it's cutting the tip of your finger off when you use it--what is up with that?! The pain lasts for hours!!! I actually put a band aid on mine when I'm done. A Dora one.

Anytime I've had to help console a friend who insists their child has diabetes because they have symptoms that mimic Betsey's initial ones (and I am NOT poking fun, honestly, it's just the way of us moms to be so paranoid) I tell them I can test their blood sugar right here, right now, and tell them if their sugar is too high. Dr. Meghan on call. I insist it doesn't hurt, a quickie poke. Hold still... not a big deal... the whole time I'm thinking YOWZA, this little gizmo sucks!!! The children always do better than I do when I test myself. Maybe they don't have as many nerve endings in their teeny tiny finger tips?

Betsey's infusion set consists of the actual site which is attached to tubing and a round end piece with another needle that hooks onto her insulin cartridge that goes into her pump. The cartridge pushes insulin through the tubing and into the needle in her bum, which adheres there with super sticky tape. 24 hours of insulin delivery--as close as we have right now to a pancreas. This keeps her alive. Amazing, isn't it?

(The infusion set Betsey uses ... the circle in the 2nd picture is around the little needle that inserts and then is retracted leaving a cannula under her skin that delivers the insulin. Note: that blue thing is the inserter to get the needle in in one swift motion-it doesn't stay connected to Betsey. )

One time, about a few months into Betsey's pump wearing days, she decided she didn't want to change her site. She took it out and decided we were NOT under any circumstances putting it back in. (This was a different pump than the one we have now, a different infusion set-it hurt more.) I was kind of speechless, I didn't quite know how to handle it because she had always just gone along, with the occasional grunt or sigh or comment-under-her-breath. I let it go. I felt so guilty, so badly about forcing her to hold still and let me jab this thing in her. It wasn't even about her having to have the medicine, the insulin to keep her alive, all of a sudden I felt like I was completely invading her, completely disregarding her feelings after all this time. She didn't want another needle, she was sick of the poking, she was done. And this was only months into it. Sweet dear, we have years of this ahead of us.

It was just after dinner time and we had a couple hours before bed time. Finally, after 4 hours, I talked her into it. It wasn't pretty, it wasn't easy, but I didn't have to hold her down. I don't know what we would have done had it resorted to that.

But she did cry. And she did go to bed without giving me a hug and a kiss. But she had her medicine.

Recently, I was out and Betsey was home with her older sister. She called me-- she was high. She felt kind of yucky. She needed a new site--we had forgotten to change it the night before, and she needed a new site. I told her I'd be home in about 1/2 an hour, any chance she could do it herself. "No way!" I suggested she try it, I'd walk her through it. She could do this. "No." That was that.

I hurried through to finish in the store. My phone rang.

"I did it."

"Betsey?"

"I did it, Mommy, I changed my site! All by myself!"

"What?! You did?? Betsey!!!!"

I was so excited, I couldn't believe it, I was so happy for her - this was huge! This was a major accomplishment for her!

"You filled the tubing?"

"Yup."

"No air bubbles?"

"Nope."

"You did 'fixed prime'?"

"Yup."

"You did the whole thing, you even inserted it yourself?? Hayls didn't help?"

"No, Mommy, I did it myself!"

And since then, she has done it 3 more times. By herself. Remembering every step, taking care to do it properly and methodically.

(Betsey filling the cartridge with Novalog insulin.

That little vial is her medicine lifeline.)

Friday 5 - things you might not know about me

(a couple days late!--oops!)

1. I'm very loud in the house, but shy and quiet out in public.
2. I absolutely love to skateboard and ripstick! (And she's good at it.)
3. Whipped Cream is my favorite food ever!
4. Horton Hears a Who is my favorite movie ever!!
5. I love a summer night with rain, thunder, and lightning. That's my favorite thing about summer.

Maiden Voyage

Wow. I am psyched about the turn of the weather so we can be outside on bikes! And double-wow, the bikes are awesome!!! This morning Jules, Amy and I ventured out for a quick 18 mile ride through a couple surrounding towns, got a feel for our legs out on the road again, tested out our new rides... heaven!

Thanks to Niantic Bay Bicycles and Amity Bikes, the Jamis and Cannondale are super sweet and will serve us well over the next few years. Absolutely delightful to ride on, comfortable, not to mention super pretty! It was so "easy" and smoooooth. I love the bike! What a difference it makes in the weight, the shifters, everything. I can't believe it.

It was a little bit cold still, especially since I didn't have warm fuzzy socks on. Jules was the only one who wore her woolies, and I was a smidgy jealous. My toes were FROZEN and even though I insisted I had frostbite (anxiety anyone?) Dr. Amy assured me I didn't, and of course, when I got home, my toes were intact, albeit frozen together. Almost. I'm definitely wearing woolies next early morning ride if it's under 50 degrees.

How to dress approprietly is still an issue with us - you don't want too many layers, but you don't want to be cold; there is nothing worse than being cold on the bike, in my opinion. Amy went through several options before settling on the same thing she started out with on. Jules was the only [safe] one sporting glasses - I'll have to check ebay for some cheapies.

I have a slight issue with a runny nose when I participate in sports, not sure what that's all about. It only tends to be an issue in close quarters training with people. I am very conscious of where I aim the farmers shot, but on a rare occassion, my aim and my sense of space is off. Sorry in advance to all my fellow swimming/running/riding buddies, for this season, in the event you are christened. Last summer I nailed a new friend Ralph - didn't realize his bike was so close to mine. Sorry Ralph - again. (Gosh that was kind of funny though!) And this morning, a fresh start to outdoor biking wouldn't be just that unless Amy was close enough to accidentally get a sample on her tire... or pedal... or was it your shoe? I know, it's gross, but it's just one of those things. Some people can't hold their excrements while exercising, I can't hold my snoogies.

I was happy to have gotten outside today if only for a short quickie, it felt great! Looking forward to another. As promised--the camera was in one of my pockets--- I did find out it is mighty difficult to snap a photo, a decent one, while riding. Jules really wanted to stop, but I thought an adventure, on-the-go shot was more appropriate.

Clearly, the over my helmet shot is not going to work.

I realize this is not much better, but you get the idea!

Thank you!

As of today, in the short time since I've announced the fundraising for the JDRF ride and started the blog, I have a total of $1765!! That's incredible! I am so happy about that and the support this has generated. It's amazing to see who is there for you, especially when you didn't even realize. Certain things affect people in ways you can't image or even dream of.

The purpose of this blog was/is to keep supporters in the loop with the training (which can always lead to good, funny posts!) and to give you an insight into life with a diabetic-from a mother's point of view and as a diabetic, a child living with type 1 diabetes, from Betsey. Some of the emails and notes I've received about how it has helped others in different situations and the perspective that they take from it pertaining to their own situation - I am in awe. I am so glad it can help in ways I didn't expect, nor attempt.

Thank you for reading, thank you for contributing and thank you for caring. It means so much.

Fitness Apparel

One of the things I can always giggle about is how far we've come with our athletic attire since we started our whole mess with triathlons and endurance events. By "we" I mostly am referring to Amy, Jen and I. There are others involved in our group that we train with on a regular basis, but when we started, the 3 of us were a trio and planned our training around each other.

The idea of swimming, really swimming, face in the water, freestyle stuff was sort of daunting, to say the least. We didn't know how into it we'd be and how sincere our level of commitment was, so we decided for one of us to join down at Saybrook Point Inn and Spa and we'd all use the same card for the membership, just as a tester. Now, the indoor pool at SPI is about the size of a puddle, and we apparently needed to work our way into the time slot at 5am down there, because there was a group of women (well, 2 women) who "swam" there on a regular basis. Since the pool was in fact the size of a puddle, there wasn't much room for anyone else. Especially lap swimming, which, of course, is what we planned on doing. Lap swimming. In this pool- the size of a puddle. (Looking back, I know those women got more than a chuckle out of us every day when we left.... after our 15 minute "swim.")

So we showed up the first day, Jen and I in preppy little tankini's, completely wrapped in towels because it was the end of winter... Amy in her bikini! We announced we'd be training for a triathlon -in this puddle- and would they mind if we joined them? The two women looked at each of us with the up and down, then to each other..... then in the pool, sizing it up in their minds and the 5 of us fitting in there... reluctantly they agreed, and in we hopped.

First of all, I could not swim. I could swim, like get from here to there with some sort or motion I used with my hands and feet flapping type of thing, but it looked so pitiful. At one point, one of the women (not the one I bumped into) asked me if I was trying to swim for speed or to keep myself afloat. Instead of offering to help me, she held on to the side of the pool and watched. It was entertaining, as I now know.

Amy was on a mission in her bikini, 3 strokes from one end to the other, and back... breaking for 5 minutes to tell us what hard work it was to swim.

Jen was contemplating a different suit because she was still nursing and the top was a little uncomfortable, plus, the pool was so small, and she thought we should try and -get this- lock our feet to some bars along the sides of the pool and just do the arm motion for the whole swim/workout time. We actually tried it. I almost drowned.

So then we graduated to the YMCA and bought swim caps and goggles. The first day with swim caps and goggles, the 3 of us stood in the locker room, squeezing our thighs together while laughing for a good 10 minutes. We all have really long hair, so we had to put it up in buns, and there was this protrusion of matter jetting out from the backs of our heads, underneath a very fitted rubber cap. We looked prehistoric and ridiculous! The googles added a new dimension of coolness - what those things do to your eyes is wrong on so many levels. I can't believe there hasn't been a better invention for swimmers. Just plain wrong. So of course, we tried the whole goggles-suctioned-so-tight-our-eyeballs-bulged.....We tried the swim cap on over our eyes and goggles on top......We had Amy do the ear-out-of-the-cap look because, well, her ears have a mind of their own in the swim cap.

It took us some time to get over that look. To be honest, I don't know we're really over it now. Today, when I stop at one end of the pool with one of them to chat about something, I still have a hard time looking at them through my goggles and not snickering.

We eventually moved to open water swimming, and actually bought "wetsuits" from the dollar store.... 3 matching "wetsuits," matching goggles and swim caps. Wow.

This was us in Niantic doing a swim in the waters the race was going to be in, in our dollar store "wet suits" and matching caps.

The same story applies to our biking gear.... we started out on our mountain bikes with baby seats attached. We'd meet in the wee hours of the morning, throw a helmet on, and pedal our hearts out around and around town. No hills to speak of, but man was it a workout. We were pedaling so hard on those things, the screws came loose on the baby seats and as we rode, they seats shifted from side to side. We were super cool on those bikes-we thought we were really bikers. No joke.

Here's Amy at the Niantic Tri on her brother in laws paint splattered 80's tri-bike. A HUGE improvement from the baby seat mountain roadster!

So as we improved our level of fitness and got closer to the main event last season, we adjusted our apparel and buckled down and even bought bike shorts. It's amazing what a difference a Speedo suit, good cap and goggles, bike shorts and decent bikes makes for a good day of training.

This whole post came to mind after receiving an email from our JDRF Chapter Leader. Included in the welcome email was a .pdf file with some apparel we can purchase for our ride and as part of the Chapter Team. The one thing that sent me doubled over in stitches was the "Coach Bib Short set" that our Coach could wear, if he so desired. I mean, seriously, who wears that stuff?? I can not wait to get out on the road with my camera and document upcoming swims, rides and runs. Can't wait! Half the fun of all this is the group of people and the memories made along the way. And the apparel. I wonder who will be the first in the one-piece bib set this year.....

Loaf it!

Daybreak

I used to wince at the idea of being up super early and getting my daily dose of endorphines up and kicking. I was an afternoon gym girl. Until I realized what mother nature offered to the select few out at day break. It's almost a reward, really, for dragging yourself up and out of the cozy sheets and wiggling into workout clothes, eyes barely opened, limbs barely cooperating. I can't tell you how many sunrises I have witnessed over Long Island Sound at the wee hours of the morning through the summer - everything from crystal clear perfect mornings, to overcast with the sun aching to burn through the clouds, foggy with mist coating my eyebrows, warm rainy mornings, humid stagnant heat -- they're all different, all exhilerating. Colder months in the early morning are not as fun, nor as often because the light comes later and I have a tight morning schedule in which to get my "free" time in. That's not to say they are any less rewarding on the days I am out in them.

Recently I took my camera and tripod down to Knollwood and captured the sunrise over the Sound. Wow. There was a slight cloud cover against the horizon in NY so I didn't get the sun actually breaking the surface, but rather seeping through the clouds into her glory. It was c-o-l-d on this day, but you'd never know it from the pictures. The sun looks so warm and balmy. It could easily be mistaken for a sunset with the warm tones.

These are the sights that keep me going in the early mornings; whether it's on a bike or on my feet. A little extra umph. Loaf it. Although, our 7 mile run this morning with the wind whipping at us for probably 5 of the 7 miles around the beach loop - felt like one long hill - the "warm" sunrise wasn't quite enough in mid-March to give me the warm fuzzies like it does in the heat of the summer. Soon....

Happy 15th Bean!

Sledding in Old Lyme.
(She looks like she was really going fast, truth is, she wasn't!)

Christmas Ball, 2008.

Betsey's oldest sister turns 15 today! First day of Spring, new beginnings. Such a great day! It was a toss up... good picture vs. bad. So we opted for both!! :)

Friday 5 - things I hate about diabetes

**In Betsey's words - 5 things she hates about diabetes:

There are so many things to hate about diabetes. I'm going to list 5. There's more than 5, but for right now I'm just doing 5:

1. I hate to test. It annoys me. Especially because i have to do it 7 times a day!


2. I don't like when I have to count out the serving size for everything. I always am the last one finishing.


3. I hate having ketones. I get shaky, sick, and a little tired. Oh, and very thirsty!


4. I don't like being high at dinner or lunch. I don't because then I can't have dessert. I'm the only one sitting at the table watching everyone slurp down their ice cream or munch on their cookies!


5. Last, but not least, I absolutely, positively HATE when people ask all those silly questions! "Is that a phone?", "Does that hurt?", "Can you have cake & ice cream?"

Sensor Readings

Betsey wears a Continuous Glucose Monitoring System (CGMS) that basically reads her blood sugar for her, through interstitial fluids. Interstitial fluids bathe and surround the cells in the body. It is the fluid in which materials are exchanged between the blood and cells. The monitor is a transmitter the size of a quarter & looks like a sting ray that she attaches to a catheter that we insert into subcutaneous fat (fat that lies directly under the skin.)

It does not take the place of actually testing her blood sugar on her fingers and getting a blood glucose reading, nor is it as accurate. It does help us to see what happens when she is doing other things and not testing; like after she eats, during sports and most importantly, while she is asleep. It reads in "real time" - every 5 minutes a number is updated to the pump and a graph is displayed showing her blood sugars readings right on her pump screen. The pump also gives a warning when she is going to go high or low, and she is supposed to (key words!) adjust or treat accordingly.

It is very accurate for us once calibrated and we rely on it every day and at night for blood sugar readings. I upload the readings to the Medtronic Minimed site (Betsey's insulin pump manufacturer) as needed and if I see a trend that needs some adjusting to her pump settings, I contact Yale and we go over the readings and discuss how to adjust.

We also keep a detailed log of her numbers. Her sensor readings and her blood sugar readings are very, very close. I love it!! It provides very valuable information and I am so thankful to have her wearing it. It brought her HbA1c down dramatically over 3 months time.

Below is a graph of Betsey's blood sugar readings in a 24 hour period, for 7 days. The different colored lines depict different days. The big green bar is her ideal range--where we want her blood sugars for optimal health. That 'off the chart red line' is the day she woke up recently and had the ketones and was sick because her battery had died in the pump!



As you can see, even with this wonderful technology and our constant tweaking and daily logging, it is a struggle to keep Betsey's blood sugar in super tight control. Every day is different, every day brings new challenges. And every day we hope it's the last day for type 1 diabetes.

Betsey's Turn-The Friday Five

Betsey and I are amazed at the amount of hits this blog has gotten since sending out the email about the JDRF ride! It has had almost 400 hits in less than a week! I hope all of you who visit here forward out the blog link to everyone in your address book for 2 reasons: 1-to help donate to the JDRF ride so we can reach our goal of $3000, and more importantly, 2-to raise awareness about type 1 diabetes and the "real life" of a child who suffers from this chronic disease.

(FYI-type 2 is totally different than type 1-another post one day for that business!!)

Betsey has seen the few comments that have been left by her friends and she is willing to participate in this blog.... minimally. For those of you who know Betsey, she is very quiet and reserved - in public. At home, she is our loudest, most outspoken and verbal child. I kid you not.

Because of such great response to the blog, we will be starting the Friday Five this week. Once a week, on Friday's Betsey will give her 5 thoughts on something mostly to do with diabetes. For example, "5 things I hate about having diabetes." Your thoughts on what you'd like to know about Betsey and diabetes are welcome and she'd be happy to incorporate your questions into a Friday Five one week.

Stay tuned...

Sláinte!

That's Cheers in Gaelic.

St. Patrick's Day always makes me smile - the idea of folks feeling Irish, drinking and being jolly, getting a wee bit rowdy, it's right up my alley. Gone are the days when we'd stay out late and turn a few shades of green, but there's still the part of Speedo and I that enjoy the atmosphere of a good pub on the 17th of March. I truly enjoy watching the different levels of enthusiasm the day everybody has a bit o'green in them.

Recently we went with Dr. C and his wife to a performance by the Irish band Danú - fantastic! Made me want to get up and do a jig. Except that I can't. At all. Our 3 older girls learned Irish step and it's one of the performances at their recital that gets thunderous applause. It's a clean, crisp, happy & energetic dance with ornate costumes and wigs. Captivating, to say the least.

It's good to be Irish. Speedo is quick to point out one thing Sigmund Freud commented once about the Irish, and he reminds me of the quote when I say or do something that leaves him with a finger on his chin, an eyebrow raised and a long drawn out "Hmmm..."

"This is one race of people for whom psychoanalysis is of no use whatsoever."

Carrot Cake

I am so thankful for the good friends we have and the smells they have wafted in front of our family over the years with delicious home cooked meals. One of my favorite things to do is to make dinner for a family whether it be for a meal plan after having had a baby, when they're going through a hard time or just because. All of these situations have brought us meal plans through the years when we least expected them -- when we needed them so much without even realizing. Dinner is one of those deliciously comforting gifts. It just soothes right to your core. Something about someone else's salad and the way the colorful vegetables splash around in the greens, the crunch of someone else's garlic bread... the way it all displays when you take it out of the to-go container and you put it on your own plates. It's one of the greatest gifts I think I've encountered as a mother, than you can give and receive. It's so easy, so satisfying and so basic.

When Betsey was in the hospital, a meal plan was set up for our family for weeks. We had had meal plans before, like every time we had another baby, but this meal plan gave me greater appreciation for offering food to someone's family. It was something I was/am so grateful for. People I didn't know to expect were making us dinner or bringing us take out. We were always abundantly blessed with good food. I am a happy Mommy when my kiddies' tummies are full; they have had a well balanced dinner, they get a sudsy bath and a good bedtime story. They're all tucked in and off to sleep and I am content.

Pickle's birthday is today, and the idea of a dinner and cake for her 4 years ago for her 1st birthday was a joke. My dear friend Jen had offered to bring us dinner that day, she knew it was Pickle's birthday and she planned accordingly. I can still taste the Carrot Cake she baked for us to be able to celebrate her 1st birthday. It was such a sweet treat. A gentle reminder that life was going to go on... things were going to be OK. There would always be someone there to bake a cake if I couldn't get to it, to offer to take care of some of the children, the support of just listening. Birthday's still happen and we'd get through this. Carrot Cake helped me more than just filling my tummy that night.

Good Friends and Carrot Cake. Thank you Jen. xoxo

Happy 5th Birthday Pickle!

Run Baby, Run!

You Can If You Think You Can!

If you think you are beaten, you are,
If you think you dare not, you don't.
If you like to win, but you think you can't,
It is almost certain you won't.

If you think you'll lose, you're lost,
For out in the world we find,
Success begins with a fellow's will.
It's all in the state of mind.

If you think you are outclassed, you are,
You've got to think high to rise,
You've got to be sure of yourself before

You can ever win a prize.

Life's battles don't always go
To the stronger or faster man.
But soon or late the man who wins,
Is the man who thinks he can.

~ C. W. Longenecker ~

I love the feeling of accomplishment, but more than loving it for myself, I think I love witnessing an accomplishment for someone else. Two years ago, I didn't think I could swim more than out to the raft at Jugs' beach and back, maybe if I had to save one of the kids, I'm sure I could manage more. But barely. We're talking doggie-paddle nonsense and oodles of kick splashing. Today I can swim 2 miles comfortably. I love the feeling of accomplishment.

Today I witnessed a major accomplishment for 3 friends that didn't think they could do it. Whenever I hear someone say "I can't do that.... run that far? Be on a bike that long?! " I tell them my favorite "I can't" story about Jugs. Last year, Jugs had just had her 5th baby, and when he was 4 months old we started our training for our first triathlon; me, Jugs and PP. One day on a whim I did the 5 mile loop from my house, alone, hitting the pavement to "Eye of the Tiger" as my first miler song. (Dork!) I loved the run around the beaches, the sunrise, it was super sweet and very rewarding. The next long run we had planned, I said to Jugs and PP, let's just do it--5 miles. Slow and steady. Jugs immediately poo-pooed it; she could never run that far. No way. Just wasn't in her. She could only run 3. Period.

Then we did it! 5 miles. A delightful, exhilerating run. The 3 of us were patting each others backs for about 10 minutes in the driveway, high fiving, tushie smackin' and everything! (FYI-today she cruised a 7.52 pace over 3.2 miles! Her husband, Mr. Fancy Pants, better watch out!)

Today, MP, MH and BB-first time runners-took on a 5K with Jugs and I in the spirit of St. Paddy's Day and nailed it! They ran well, ran hard, finished together and they finished something they thought they just couldn't do! I am so proud of you girls!! You set your mind to it, you did it and you did it so well! What an inspiration! What an accomplishment!

When I am sitting on that bike into my 6th hour, mile 90-something, I know I can think of you girls for encouragement! Thank you!

439

How ironic that today, 4 years ago, we wake up and Betsey is in the same predicament she was that day!

I was putsing around upstairs getting the morning going, Betsey's oldest sister calls me from the bathroom, "Mommy, there's something wrong with Betsey! She's shaking!"

I sprint all 3 ft to the bathroom, ask her if she's low, to which she replies, "No, I'm high." I grab her pump and start to try and go through the numbers, but she warns me, there is no battery. UGH! Into crisis mode we go.

I race downstairs, grab the insulin, a needle, battery, a quarter, ketone strips, paper cup, new infusion set and time stops. It's so odd how when these situations happen, no matter what else is going on, everything else takes a back seat, the other children fall into this holding pattern and they just pick up the slack - it's amazing. I don't ask them to do anything, they just kind of fall into "crisis routine" - one child reaches out to another, another makes sure the littles are ok, and everything just kind of hums along in the background amidst the familiar scent of insulin.

I test Betsey, she is sitting on the toilet, frozen. 439! (An ideal number range is between 80-130 mg/dl) Ouch! No wonder she's not feeling well... no battery probably all night. She went to bed with a good bed number-159-and I didn't get up in the night to test her.

So we change the battery, I give her a double dose of insulin with a needle in her arm, change her infusion set in case of a blockage, put a temporary rate on (you can increase or decrease the amount of insulin she receives for her basal rate as needed. In this case, I doubled the rate for 2 hours) and I remind her that she has got to drink water and that in about 30 minutes that insulin should kick in and help out a bit.

That doesn't get through to her because all she knows is the tremendous urge to throw up. It takes over her. She must have been high for hours.

Within minutes, she's crying, panting, starting to shake and she's scared. It's a violent thing to throw up with high blood sugars. Like nothing I've ever seen any of my kids do even with the worst throw up bug.

Round one of throwing up and she feels slightly better, but not out of the woods. A quick blood sugar check in a half an hour, 401. Down, but certainly not where we need to be. On these kind of mornings, they used to happen frequently before we got the CGMS (Continous Glucose Monitoring System) it takes a good 3 hours to flush the ketones out, bring her number down and get her of to school good as new.

I recently came across another blog from a woman who has type 1 and she wrote something so fitting in one of her posts. One of her friends had said to her, "Diabetes doesn't define you, it helps explain you." And I thought, Wow, that is so true about Betsey. 4 years ago today Betsey was diagnosed. Has she changed because of the diagnosis? Sure. Is she different because of the diabetes? Absolutely. But, it doesn't define her either, it helps explain her as well. I loved that quote.

"Low" talk

When Betsey has high or low blood sugars, I can usually tell right away - her mood changes, she acts differently, she's annoyed, or quick, or aloof... Most times I have to call her on it b/c she is still in a phase where she wishes it away, often. Her thought process is something like, if she doesn't do anything about it, high or low, it will just *go away* and she'll be done with diabetes. The idea of pulling out her meter and testing, having to have juice or give a correction with her pump, while it doesn't seem like much to me ("Just do it, Bets!") to her, those minutes are minutes she'd rather be just doing. Time wasted as far as she's concerned. She's 11, for heavens sake. There are more important things going on.

We've been adjusting her basal settings recently on her pump to fix some after dinner/before bed lows, not a good thing, and last night she dropped after dinner again. Our puppy is driving me bonkers and everyone else, too. Betsey was in charge of laundry last night and was in the process of trying to pick up the pile everyone throws down the stairs as they hop in the shower. The puppy was nipping at her feet, pouncing on her, she was giggling in an annoyed way, but her laugh was so tired--her energy depleted, completely. I could hear it in her giggle. She was low, but not wanting to agknowledge it.

I was cleaning off the catch-all island with papers and in the midst of the laundry/puppy disaster, told her, "Here Bets, these are yours too, please put them away," to which she snapped, "I know, I'm doing laundry right now!" Now when one of the little people in the house are snippy, sometimes I say, "Oops, back up... try again..." so they repeat what they're trying to say in a nice way, a more pleasant tone, if you will. So I said that annoying line to her... She repeats herself, still snippy. And I said, "Bets, a pleasant 'Just a minute please' would be sufficient," and she said it again, in a sing-song-pleasant-in-your-face-happy way, to which I replied, "See, that's sufficient," and she said, "I'm efficient."

I nearly fell over laughing. I told her to stop and test right now. She was clearly low. She thought I was having her repeat after me, and thought I told her to say, "Just a minute please, I'm efficient."

Awww, Betsey.

She was 45. Way low. Treated with juice and a temporary rate before bed.

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The Wave Dilemma

This morning Bubbles, Jugs, PP and I got out for a run in the warm Spring-teaser air. 7 miles of bliss! We encountered other morning people out and about despite the time change; some running, walking, riding. There is nothing like an outside run-anything beats the treadmill.

Recently in my Runners World magazine there was an article about "to wave or not to wave and how do you do it when running" sort of thing. I got such a kick out of it because when Jugs, PP and I started our riding last year --mountain bikes with baby seats and crooked helmets-- we were the over-excited wavers, the ones who let go completely with our entire arm from the shoulder down to the finger tips and we gave big giant waves. Hello, GOOooOoD morning! PP was just shy of stopping, getting off the bike and shaking hands with passer byers.

Then we graduated to borrowed road/race bikes and fixed our helmets so they fit better. PP's bike was so hot from the 80's with splattered paint designs, I think it helped her in the wave department. Her whole arm wave turned into more of a winky wave - her hand moved and her fingers did a little winky wink thing. Like a cutsey wave. She still wanted to stop and greet people more intimately, but refrained because she was afraid of losing speed. Jugs was still doing the whole arm wave. Just happy to be on the bike without a baby seat behind her!

Then we bought bike shorts and really felt like bikers. On our borrowed bikes. One day very early in the morning we passed a group of cyclists, serious cyclists, and half of them didn't even wave. We noticed one guy out in front give us a fingertip movement from his lower bar. It was such a slight movement that even our winky waves looked over the top and we would have missed his wave entierly but we were obsessed with how other bikers wave because clearly, our winky wink wave was not what most cyclists do to each other. Clearly. We lost probably 5 minutes in that stretch laughing after they passed by and we tried out finger waves, hand waves and exaggerated waves all the while wondering what was cool and not cool.

This morning, we revisted the wave dilemma as we encountered other early morning enthusiasts. In conclusion, I think our winky wave is not cool.

Betsey's Diagnosis

The day Betsey was diagnosed is forever molded into a part of my brain. It was a very difficult day followed by an emotionally draining week and a terrible, horrible month.

Speedo and I had secretly planned a vacation for our troops to Florida- it was huge. We had never flown with all of them (there were 5 of them at the time, the baby almost 1) and we planned, packed, shopped and arranged on the sly... during school days, after bed time stories and whenever we found time, for months! And we made it happen and pulled it all off one freezing cold March morning (2:30am!).

We didn't realize how sick Betsey was during our stay, there were so many "explanations" we gave as to what was going on with her.

I noticed when I put sunscreen on her the first day she felt so thin. Kids grown in spurts-- they grow out, and then up. Out and up. She was growing. She was thinning out.

We had gotten tickets to one of the Yankees Spring Training games and drove over an hour to watch them play - the troops were thrilled! We probably stopped 3x on the way there for Bets to squat on the side of the road.... It was Florida, it was HOT and we were all drinking alot. We watched about half the game and then left; more bathroom breaks, nursing a baby in stadium seats, a couple other tired kids who would rather be swimming....

She developed a rash on the 3rd day there-- a yeast-like rash. It was so uncomfortable to her, I gave her Benadryl at night to help with the itching. It was surely from the sand in the wet bathing suit all day. The chlorine in the pool. We'd see the DR when we went home, no use in seeing one in FL for such a private matter.

We feasted on warm Krispy Kreme donuts every morning, fresh squeezed orange juice--yummy! Betsey always wanted any leftover donuts. Boy, if I could eat like that and not gain weight! Sugar galore. Stuff we wouldn't dream of giving the troops on a regular basis, but hey, we were on vacation!

The flight home was long. The troops were exhausted. Ready to be home. We touched down around 11pm. Drove home. Tucked all the littles in bed and were in bed ourselves by 2am.

First thing in the morning, after a great sleep in our own warm, cozy clean sheets, I made an appointment at the DR office for Betsey. She was so uncomfortable, poor thing. I honestly didn't think it was serious. The thoughts going through my head, worse case scenerio were something along the lines of bad yeast infection and a UTI. Antibiotics, not a problem-O.

We went in at 1:30 in the afternoon. We happened to see one of her friends there; he had a sore throat, and asked why we were there. I lied. I didn't think Betsey wanted me saying she had a rash! "Oh, her ear, "I told the dad. (I later called the mom to apologize for lying!)

In the room, while we waited for the DR, Betsey had to use the bathroom.... again. The DR came in and we went over symptoms. He wanted a urine sample, of course, and Betsey, I chuckled, would be more than happy to provide one, the camel she had become! But first we chatted. He threw out some scenerios. Yeast-yes, but unlikely at her age. UTI-perhaps. Sounds like it could be. Worms-yes, another possible cause. He instructed me on how to check for the worms should that be the diagnosis, and I shivered and swallowed hard thinking of all of us checking each other for worms in the dead of the night in the dark with flash lights. Oh the visual.

Today, I'd take the worms anyday.

He left with a urine sample and came back forever and a day later.

I can see his face. His soft eyes, his dark features. He blinked slowly as he sat down.

"What is it? Worms?!"

"Not worms, " he said with a slight giggle, in a very quiet voice.

"What?"

"She has some sugar in her urine...."

"OK. We just got home from Florida-we ate out every store with Krispy Kremes. I mean that."

He just kind of looked at me.

She was spilling a lot of sugar, he said. I asked for the whole "small, medium, large" depiction. Large, he said. A lot.

"Which means what?"

"Well, not completely sure until we get some blood tests. But diabetes. You need to get her to the ER right away."

I know I turned a few different colors at that point, I know because when I sit and think of this conversation on any given day, I turn the same colors and the feelings come right back. I had to put my head between my legs. I needed water. I asked him for water. I could not breathe. I started to shake. I didn't know how I was going to get to the ER let alone get up from that chair.

I don't remember leaving the office. I don't remember the drive home. I must have called Speedo. I remember being in the driveway waiting for my mother in law to come and drive me with Betsey to Yale. They would be expecting us. I remember when she got there I was shaking, pale and speaking nonsense, too fast, not making sense.... thought process out loud. I remember trying to stay together as I talked to my mother in law outside in the driveway, out of ear shot from the littles because I saw Betsey's thin face in the window looking outside. But I wasn't together, I was a wreck.

The ER was a nightmare. I called my brother's wife's father who happens to be an endocrynologist on the drive up and had him give me the diabetes 101 talk--what to expect, terminology crash course, numbers and their meanings.

I made some phone calls. I honestly thought that the more people I call that I knew had this disease, would be able to tell me that she didn't have it. Couldn't be. Not my kid. We just got back from a great trip. Things are good. I have a nursing baby at home and 4 other kids to take care of. Diabetes.... what?

The next 5 days were an absolute mush of blur. Mush of blur. I don't know who had half the troops. Speedo, we decided would stay overnight at the hospital with Betsey for the duration and I would come during the days. I couldn't leave the baby overnight, and all the other children really needed some sort of mother at home. Though I wasn't much of anything at that point. I did not cry for 3 days. I did not shower for 3 days. My laundry pile was so big it scared the dust bunnies. Our house was in a holding pattern and a disaster after a long trip away. I slept like a rock from 12 midnight until 5am for 4 days. Exhausted. Got up, got dressed, went to the hospital. One day, I couldn't find parking. Day 4. No parking. So I just parked. I didn't care where. The pediatrician who has seen the troops since #1 was coming in and I wanted to see him. I parked the car in some lot that said No Parking. Someone yelled at me on the way into the hospital and I lost it. I cried for the first time in days. And I couldn't stop.

I got a big orange sticker pasted on my drivers side window and drove around with that thing on for about 2 weeks before I realized it was there and needed to come off. Those days in the hospital were an all day long crash course on how to handle diabetes. Yes, type 1 diabetes. Just like that.

Weight loss. (Like 10-15 pounds on Betsey's little 7 year old self)
Excessive hunger.
Excessive thirst.

Hindsight--- I remember one day in particular before our trip, I was picking up the troops after school, and Betsey b-lined it right through all the moms and dads, straight to the water fountain. Passed right by me. Didn't even see me. Like she was in love with the long lost water fountain and hadn't had a drink in days! I said, "Wow, did you just have gym, what's that all about?"

And pictures ... pictures of her from the couple months beofre when her diabetes had started, she looks sooooo thin. How did I not know? How did I not know.

So they the hospital sends us home. Home with a child who is dependent on shots of insulin to keep her alive. And we have to prick her with this needle. We have to draw up the correct dose of insulin. This is what's going to keep her alive. This is how you mix the insulin, this is how you shake/roll it. This is the long lasting, don't mix it up on accident with the short lasting. Don't give her too much, she could get too much and go lo. She could go into a coma. She could seize. She could die. Take her home. Test her sugar every 4 hours or more. Wake her in the night to make sure she is OK, test her then, too. And her diet. Write everything down. Write down what she eats, when she eats, the carb counts in all of it. And call us daily between 12-4pm to go over insulin injections and changes to doses. Always have food for her when she is away from home. Carry the glucogon everywhere in case she passes out. Set up a plan at the school. Juice is now her medicine. Sugar is her enemy and her best friend.

What? When? huh?

AND, they said, send her right back to school. Just like that.

The first night home, I think I slept 2 hours. I was wide eyed thinking of how I was going to take care of this child.

We had a meeting set up at school with the nurses, the teachers, the pyscholgists, on Monday after the weekend.

I had notes to read them, I tried to explain how they were going to take care of her for me because I couldn't be there. Betsey needs this. She needs that. She is quiet so please, please make sure she is OK all the time. 2nd grade little girl. She just wants to play. I just want her to play.

The meeting ended; everyone except me and Speedo felt good about the plan. I could not believe I had to let her go.

Her teacher took her hand, walked her out of the room, down the hall. I jumped up, went to the door, watched them walk and when they were out of sight, I collapsed... onto the floor, into Speedo. He scooped me up and held me. I sobbed uncontrollably. How could I leave her here with these people who don't know how to take care of her when I don't even know how to take care of her.

I stayed at the school that day. Nursed the baby there. Walked in and out of the school. I was not doing well. Speedo was my rock. He was a silent, steady and calm supporter. He didn't budge. He was crying inside, falling apart, but waiting for me to pull it together. He was willing to give me days, weeks, months to get it together and tackle it and then he could sit and cry. His baby. His daughter. Inflicted with this horrible, terrible, devastating disease.

Betsey you wonder..... how was she? She was great. Didn't miss a beat. Continued straight A's. Continued to the beat of her own drum, just going along, mindful of her body, aware of her sugars and how she felt. A perfect patient. That's Betsey.

But don't get me wrong, she is not OK with it. She hates it.

She cries - not often, but when she does, it is heart wrenching. She is afraid to die. Just the other night, she came into our bed in the middle of the night, asked to sleep with us, told her Daddy she was scared. He asked if she had a bad dream. "No, " she said, "I'm afraid to die." This is an 11 year old child. She should not be thinking about death.

Her little body is forever changed because of the intrusions she must inflict upon herself with her pump and monitor and testing. Her little bum is scarred and bruised from needles penetrating it on a regular basis. Her finger tips get sore from testing. Her mind gets tired of numbers. One night I was testing her in the middle of the night, it was silent in her room, I did not speak. And she mumbled as I drew blood, "200? Correct that. That's high.... just correct it." She was asleep, and still thinking about diabetes. Her mind never escapes it.

Today, Betsey wears a pump. Is it easier? Absolutely. Is it better? Absolutely. Have we "settled" with this? Absolutely not. We appreciate the advances in the treatment of type 1, especially with insulin pump therapy and the Continuous Glucose Monitoring System our insurance, Connecticare, was so quick and willing to allow us to get for Betsey. But never, not for a second, will we be comfortable with her having this. Ever. Every day, the first thing I think of is, Is Betsey OK in the other room? There are many nights I still wake up to test her and make sure she is an appropriate number, not too high, not too low. And all day, I am attached to a phone, awaiting phone calls with blood sugar readings and "on" to know what to do, how to bolus, how to adjust, when to go into the school and change the infusion set. If you've ever talked on the phone with me, chances are, I've had to cut it short to take the call from the school nurse or Betsey.

Betsey tests her blood sugar an average of 9 times a day. She mainly test on her teeny tiny fingers. Some times more, sometimes less. She wears the insulin pump that delivers insulin 24 hours a day through a needle in her bum. On the other bum cheek she wears an even bigger cannula (1" long) that reads her interstitial fluid to give us the "real time" sensor readings delivered right to her pump without having to test [as much.] This device has been a life saver, literally, for overnight blood sugar readings and allows us to adjust her insulin basal rates through the night to keep her blood sugar in a safe range.

Night time is the worst. Betsey can not do sleep overs. Eventually, sure, she will be able to. But not yet. When I go to bed at night, I always have thoughts of the "what ifs" of her not waking up.... Can't help it. It's something that can happen silently, and I would never know. I've gone as far as to set the alarm clock with 2 different times each so Speedo and I get up and check her during the night during times when her blood sugars are so wacky and unpredictable.

She can't always have cake at parties or goodies at friends' houses. She can't always swim - she doesn't feel the sensations of a low blood sugar in the water and it this is such a scary situation. So if her blood sugar isn't high enough, she has to wait it out and watch the fun. She has to watch from the sidelines, seldom complaining.

This isn't fair. But this is her life. This is Betsey's life. And she is an inspiration to me, her siblings, her friends and those who don't even know her.

Documenting

Today I start this blog to keep track of progress in a huge project my husband "Speedo" and I are taking on. We're Riding for the Cure this summer in honor of our daughter, Betsey, who has type 1 diabetes. Betsey was diagnosed on March 13, 2005. The ride is 105 (!!) miles long in VT. It will be the single most challenging thing we have ever done, alone and together. This blog should highlight the good times and the bad, the milestones along the way, the training, our friends we have along the ride with us and those we meet along the way and oodles of great photos to make us smile!

Thank you to those of you participating in this very worthy cause. And know that in her quiet heart, Betsey thanks you too.