I Wish It Were Three Years From Now...

Time flies.  My kids are growing up too fast.  I never wish time away...

Well, almost never.  Ally had a rough diabetes day yesterday.  Her CGM was reading above 400 and finger stick showed a blood sugar of near 400.  She had been swimming (on and off of her pump for a few hours), and her pump site came loose.  Tears, tears and more tears.  She was hungry and couldn't eat anything until we could get her blood sugar to come down a bit.  She had just a few minutes to get herself ready for cheerleading practice, where she would be helping to coach the younger peewee cheerleaders.  She couldn't find her shoes.  She couldn't find her bag.  She didn't like the way I had put the bow in her hair.  Tears, tears and more tears.  Finally in the car on our way to cheer (a few minutes late now) and she said, "I don't think I can even remember the cheers right now!"  Tears!  I am feeling so bad for her because I know that a blood sugar of almost 400 is making her feel really terrible.  These are such helpless moments for me because all I can do is give more insulin and wait it out with her, but I can't make her feel better.  We are almost to the park and she says (in a tween sort of huff), "I JUST WISH IT WERE 3 YEARS FROM NOW!"  I looked at her kind of puzzled.  She continued, "Because then I would have a bionic pancreas and I wouldn't be 400!"  And I suddenly wished the time away too.  I wish we could fast forward to a time when she would not have to worry about her diabetes.

Our hope for a better quality of life for Ally has been re-energized by the Bionic Pancreas.  Seeing first hand that the Bionic Pancreas could give her better blood glucose control with very little effort has made us wish the next few years away.  We simply cannot wait for the bionic pancreas to become a reality for Ally and all those living with type 1 diabetes.

I know that some people really believe in only supporting research towards a biological cure for type 1 diabetes.  Our family has always, and will continue to, support research towards a cure.  But, we believe whole-heartedly that we must support this type of technology that will ensure a better life for those who are living with type 1 diabetes.  Until there is a cure, we are still managing the ups and downs of diabetes 24/7.  Until there is a cure, Ally is at risk every single day of having a severe hypoglycemic event.  Until there is a cure, every day is adding to the risk of her developing long term health complications.

The Bionic Pancreas is not a biological cure for Ally's diabetes. However, we believe that it will be the best tool for managing her diabetes...until there is a cure.

We know that in order for this technology to become a reality, we must support the efforts of the researchers in any way that we can.  We have decided to take The Bionic Challenge!  This is what the Bionic Challenge is:

We are asking for the assistance of the T1D community to raise the funds needed to build the integrated bihormonal bionic pancreas platform that will be used in our final pivotal study of 2016.

The Bionic Challenge (which officially launched on July 3, 2014 at the Children with Diabetes Friends for Life Conference in Orlando) asks each participant to raise $5,000 by September 1, 2014. If each participant can turn to their friends and relatives and obtain 50 $100 donations, we can continue our development effort and keep on schedule for our final pivotal study in 2016.

We have just two weeks left to meet this goal!  If you would like to make a donation to help build the final bionic pancreas, please click the link here to find out more about how you can donate.
Credit card donations can be made directly to Boston University here: https://www.bu.edu/alumni-forms/forms/eng/damiano/.  Please reference Team Ally - Ohio if you make an online donation.  If you'd like to make a donation in another form, please contact me at BoxOfChocolates@hotmail.com.

Thank you so much for your support!  Go Bionic!

This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

After The Bionic Pancreas

I have been anxious to tell you all about Ally's experience wearing the Bionic Pancreas. But I have also been in catch up mode after being away from home, my hubby and my other girls for two weeks. I've caught up on bills, shopped for school supplies, weeded my garden. I'm still catching up on snuggles though. I mentioned to Ally that I needed to get an update written for the blog. She offered to do it for me! So here you go an update on Ally's "bionic experience" from Ally herself...


If you're a kid like me, a type 1 diabetic, how many times in the past two weeks have you been asked, “Do you feel high? Do you feel low? What does your CGM say?”  I’m counting. It’s only been one day and I'm already at 12.

That was one of the great things about camp. I was monitored 24/7, but I wasn’t asked any of those questions. There wasn't any reason to. I was wearing the Bionic Pancreas.

The Bionic Pancreas, aka the Bio Panky, is amazing! It kept my numbers in range the whole five days that I wore it!  (And it required a lot less work - and questions.) The five days that I didn’t wear the Bio Panky, my CGM graph looked like a roller coaster. The reason I think it worked so well is that I wasn’t just given insulin, the Bio Panky gave me glucagon too. A Dexcom CGM was paired with an iPhone that read the CGM every five minutes and depending on my blood sugar, it would give me insulin, or glucagon.

Another cool feature of the Bio Panky is that I didn't have to count carbs for everything that I ate. I just had to tell it if I was eating a small, normal or large meal for breakfast, lunch and dinner. At snack time, I didn't worry about entering anything at all.

If you saw my CGM graph, you might even think that it was a non-diabetic's graph. But it really was mine...and I was even at camp getting a lot of exercise. Usually when I have that much exercise, my blood sugar goes low low low. I never went low while I was on the Bio Panky, not even at night.

Some things do need to be fixed before the Bionic Pancreas will be on the market. Glucagon is not stable for more than 24 hours at a time right now, so we had to change our glucagon pump site every day. Also, it needs to be combined all in one device. The research team told me that these things will be taken care of by the time its out on the market.

I had so much fun at Clara Barton Camp. I made new friends. We laughed and sang lots of songs together. We played fun games, like gaga and cities and capture the flag. Dance night and the talent show were fun. Swimming in the pond was pretty cool. I learned a lot at camp too. I learned how to make a duct tape pump pouch :) And not only did I learn to try a site in my stomach, but I learned to do it all by myself!

This is me inserting a stomach site
which I learned at Clara Barton Camp.

But the best part of camp was learning more about the Bionic Pancreas. I can't wait to have my own Bionic Pancreas someday!

This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  


READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE

I WISH IT WERE THREE YEARS FROM NOW

Today I Rejoice!

Today I rejoice because it is time to pick up my camper!!!  Two weeks ago, I wasn't rejoicing, I was crying.  Shortly after Ally began her bionic journey, I had to say goodbye to my sweet girl.  I tried so hard to leave camp before she saw me cry.  I was not exactly succesful.


I tried to tell myself not to cry.  I was about to have a "momcation" with my friend Wendy for the next two weeks.  Two weeks of not thinking about basal rates and changes that need to be made.  Two weeks of not counting carbs.  Two weeks of sleeping through the night, without worrying that her blood sugar would drop too low.  Two weeks without wondering how her food and her exercise will affect the next insulin dosing decision.  I was looking forward to this mom break.  But I still cried.

I was feeling an overload of emotion that day.  I would not see my girl for two weeks.  She had never been away from me for that long before.  Like never!  But that is not what made me cry.

I was overwhelmed with emotion because she had just started wearing the bionic pancreas.  I was going to be putting my trust in others, in a machine, to keep her alive. That has been my job every day since her diagnosis.  The thought of letting that go completely for two weeks...overwhelming!  But that is still not what made me cry.

I cried because for the first time in five and a half years, Ally got to experience a little less weight on her shoulders.  She would get to experience the "unburdening" of her diabetes management.  The bionic pancreas would be making the decisions about dosing her insulin and glucagon.  Every 5 minutes.  That's about 12 times an hour.  288 decisions a day.  And she didn't even have to think about it!

And that is what made me cry.

So today, I will go pick up my girl.  I will rejoice!  (And maybe I will cry a little too!)


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  


READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

Bionic: Superhuman? Nah, Just Superhero!

When I say "bionic", many people think of The Million Dollar Man or The Bionic Woman.  And while I do think Ally is a superhero, The Bionic Pancreas will not give her superhuman powers.

Much of the diabetes community is familiar with the research happening around artificial pancreas technology. However, I do have many friends and family who may not be, and I'd like to take a minute to explain just what I mean when I say "Go Bionic!"

Bionic Pancreas: What Is It?

The bionic pancreas is a device which automatically controls blood sugar.  The current version, which Ally wore at Clara Barton Camp last week, is made up of an iPhone which runs the algorithm, a Dexcom CGM (on the back of the brick containing the iPhone), and two infusion pumps - one for pumping insulin and one for pumping glucagon.  This truly mimics a working pancreas, which produces both of these hormones.  Insulin lowers blood sugar.  Glucagon raises blood sugar.  In a person with type 1 diabetes, the pancreas is not producing insulin and glucagon function is impaired.

Ally's Bionic Pancreas, Clara Barton Camp, 2014 Summer Camp Study

(The final version of the bionic pancreas should be a single device with two chambers - one for insulin and one for glucagon, along with an embedded control algorithm and integrated CGM.  So when the device reaches the market, wearing it will not be as cumbersome as the picture appears, but rather very similar to the one insulin pump which she currently wears.  And on a sidenote, apparently Ally didn't mind the weight of it at all.  She was quoted in Kerri's article saying, "Even with all the pumps on and the phone, I could still do a back-handspring in the grass.")

Bionic Pancreas: How Does It Work?

The bionic pancreas system takes a measurement of blood sugar every five minutes, using the CGM (Continuous Glucose Monitor).  Then it automatically makes a decision about how much insulin (for lowering blood sugar) or how much glucagon (for raising blood sugar) to give.  It makes these decisions every 5 minutes, 24 hours a day.  That's 288 decisions a day.

Currently, Ally wears an insulin pump and a CGM.  We are constantly checking blood sugar and making decisions about dosing insulin based on some intuitive thinking about her current blood sugar, the food she is eating, her current basal rate (background insulin) and any activity she may have had - or will soon have.  Even with the best intuition and planning, we still have to be concerned that the amount of insulin we choose to give could cause Ally's blood sugar to drop too low.

The bionic pancreas makes these decisions without the input from the person with type 1.


Bionic Pancreas: What Does This Mean For Ally?

The bionic pancreas is not a cure for diabetes.  It does mean that Ally will still have to wear a medical device and take on the responsibility for maintaining that device and its parts (inserting infusion sites and cgm sensors, refilling insulin and glucagon cartridges).

The bionic pancreas does mean that Ally's diabetes will be controlled completely by this closed loop system.  It means that she will not have to worry with counting every single carbohydrate that she puts in her mouth, or that her activity will make her blood sugar drop low.  It means that she will not have to constantly be adjusting basal rates.  It means that she will be able to sleep through the night without the worry of her blood sugar dropping too low.  And it means that she will be able to maintain blood sugars within a tighter range without much effort.

The bionic pancreas will help Ally, and all those living with type 1 diabetes, to achieve better blood glucose control and, at the same time, ease the burden of diabetes management. 


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

Message in a Bottle...or a Picture :)

So when your daughter is away at diabetes camp for two weeks and you don't get to talk to her, you rely on pictures and letters to get the scoop!  I read a lot into these pictures :)

Photographs courtesy of Clara Barton Camp photographer via ecamp website. 

I see a smiling girl in several of these pictures.  I'll take that as she is having fun!

I see her really concentrating on the apparent warm up stretch.  I'm assuming she's either really tired or just not into exercising at the moment!  (And hope that she's not sad about something.)

I see her chillin' out with the girls.  I'm happy to see that she is making new friends.

I see her enjoying a swim in the lake.  I took that as a fun way to cool off!  Thanks to my friend Wendy who pointed out that it appears that Ally is wearing a site on her tummy.  Woa!  I'll take that as success!  One of Ally's goals while at camp was to try new sites and to gain self-confidence at inserting her own pump sites.

And when the mail arrives with several letters from camp - all at once - you read them over and over again and know that all is well at camp!

Excerpts from Ally's letters from camp

This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MY HEART SWELLS

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

My Heart Swells

My heart swells when I think about Ally.  How much she’s grown, how strong she is becoming.

Ally has always had a positive attitude, but like most people living with diabetes, she has moments of really disliking diabetes.  It is a constant burden to worry about blood sugars and how foods, exercise and emotions will play into the next insulin dosing decision.  There are many legitimate reasons for getting down or feeling overwhelmed with Type 1 Diabetes.

Following our Friends for Life trip last summer, Ally and I talked about choices for the next year.  I asked her if she wanted us to attend FFL again, or if she wanted to go back to diabetes camp next summer.  The last two years FFL and diabetes camp have overlapped, so we had to choose one or the other.  She was torn because she really wanted to go to camp this summer, but knew that if she went to FFL, she'd get to spend time with Addy, her "friend for life".  Jokingly, she said, "How about if Addy comes here and goes to camp with me?"  We laughed and I said I wished that were possible.

Then when I learned that Ed Damiano and his team would be recruiting for the Bionic Pancreas Camp Study, I showed Ally a picture of Clara Barton Camp.  I said, "What if you and Addy could go to camp together?"  The first thing she said was, "Mom, isn’t that the camp where they got to wear the Bionic Pancreas?  I DEFINITELY want to go there.  Can I wear it while I am there???"  She had no idea that my next question would be “How would you feel about being in a clinical trial for 6-11 year olds?”  She screamed, "DEFINITELY!"

I had started out thinking that I needed to really talk to Ally about this study and make sure that it would be something that she really wanted to do.  While I had listened to Ed Damiano present his Bionic Pancreas project multiple times at different Children With Diabetes events, she had only seen a video and briefly heard us talk about it.

What I didn't know was that she had already "bought in" to the idea of it.  I learned that she had written a paper about the Bionic Pancreas at school shortly after watching the video from last summer's camp study.  She also told her school nurse and teachers all about it.  From then on, she asked me month after month if I had heard anything about recruiting for the study.

It makes my heart swell with pride that Ally said “DEFINITELY” when I asked if she’d be interested in participating in the Bionic Pancreas Summer Camp Study.  It made me cry the second that I saw her wearing it.  She is doing something awesome!

She is turning this burden of diabetes into something more.  

This has been an opportunity for Ally to experience freedom from her diabetes, even if just for a short time.  But this has also been an opportunity for Ally to participate in a clincial trial that all those living with diabetes will hopefully benefit from.  This has been a chance for Ally to advocate for herself and others with diabetes.  This makes my heart swell!

Ally was smiling from ear to ear from the moment we arrived at camp until the moment that I said goodbye.  (And she even tried to keep smiling while I bawled!)  She has been excited about the bionic pancreas since the first time she watched a video about it.  As I was leaving camp, she said, "Mom, I think I'm going to use up all of my pictures on this (pointing to her bionic pancreas) and of Ed Damiano!"  Lol.  She is old enough to appreciate how life changing this is for her and for all those with diabetes.  And I think she's old enough to understand how proud we are of her too!

Few things make my heart as happy as it does when something gives Ally hope for a better quality of life.  THANK YOU AGAIN to the whole Bionic Pancreas team!  You have given Ally, our family and all those with type 1 diabetes something to feel hopeful about.



This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  


READ MORE:

UNTIL THERE IS A CURE

3..2..1..GO BIONIC!

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

3..2..1..GO BIONIC!

I know that my blog has been gathering dust for the last several months.  Life is busy.  But this week we have been blessed with an opportunity so big that it warrants a good dusting off of the old blog!
Ironically, one of my last few posts was exactly related to the reason for dusting it off today.  "Until There Is a Cure"  is the beginning of the story which led us to this point today.    

While we have, in a way, been counting down since December...THIS is the most meaningful countdown I've ever experienced.  Please take a minute to watch:

(*Video credit goes to Wendy!  My video is a mess.  I was shaking and you get to see lots of the floor and the ceiling.)

As Ed Damiano counts down from 25, I am overcome with emotions.  So many things were running through my mind in those last few seconds.  I was thinking about how proud I am of Ally for wanting to be a part of this clinical trial.

T-minus 20 seconds and counting...I was thinking, "Oh my gosh, she is taking her own insulin pump - that she wears every.single.day - off for the next five days."

10 seconds..9..8..7..6..5.. "This is going to be a game changer for all type 1 diabetics.  I can't believe we are doing this right now!!"

5..4..3..2..1..GO BIONIC!  I heard those words, "Go Bionic", and my heart skipped a beat.

GO.BIONIC.  That is huge!  That means that her diabetes is now being controlled completely by the closed loop system.  That means that for the next five days she doesn't have to worry about counting how many carbs she puts in her mouth.  She doesn't have to worry about her basal rates.  She doesn't have to worry about figuring a correction dose of insulin for high blood sugars.  She doesn't have to worry that she might go low at night after so much activity.  The entire burden of diabetes management has been lifted off of her shoulders for five days.  She can just be a kid at summer camp!!!!

"Go Bionic!"  That is the moment that Ally became bionic.  That is a moment in time that I will never forget.

My Bionic Girl!!

We could not be more grateful to Ed Damiano and the entire Bionic Pancreas team for all of their dedication and hard work in making this a reality for our daughter and for all those living with Type 1 Diabetes.

Ally, Addy & The Bionic Pancreas Team

Read more about the Bionic Pancreas here:
http://www.bionicpancreas.com/
http://www.bu.edu/bostonia/2014/eng-profs-bionic-pancreas-takes-a-big-step-forward/
https://www.youtube.com/watch?v=_3aSRscC4Cg


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

UNTIL THERE IS A CURE

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

Spare a Rose - Save a Child

Spare a Rose - Save a Child is an online effort that raises money and awareness for IDF's (International Diabetes Federation) Life for a Child program, which provides life-saving diabetes supplies, medication and education that children in developing countries need to stay alive.

With Valentine's Day approaching, it's the perfect time to share some love!  It's very simple to participate, really.  They are asking each of us to take the typical Valentine's Day "dozen roses", buy one less rose and donate the value of one rose to spare the life of a child.

This line from the campaign page keeps ringing in my ears:

One rose, one month of life. A dozen roses, a year of life for a child with diabetes.

I encourage you to visit this link, http://sparearose.org/ and read more about this Spare a Rose campaign.


Follow this link to Give:
www.SpareARose.org/give

Then print one of these cards to show your loved one that their love has inspired you to donate the cost of one rose to Life for a Child.

 

Thank you for Sharing the Love this February!
                           

Until There Is a Cure

"It's time to move beyond a mere offer of hope, it is now about delivering on a promise!"   -Ed Damiano, PhD, Associate Professor of Biomedical Engineering at Boston University

At the Children With Diabetes Focus on Technology conference this past weekend, I had the opportunity to listen to Ed Damiano give an update on his research into building the Bionic Pancreas.  Along with his team at Boston University and Masachusetts General Hospital, Ed has developed a closed-loop bionic pancreas that uses continuous glucose monitoring along with a pump that will deliver both insulin (to lower the blood glucose) and glucagon (to raise blood glucose).  His goal is to have this bionic pancreas ready to go in just 44 months!  Just in time for his son to go off to college :)

Could this truly be a reality?

After we left the conference, my mind was spinning thinking about this bionic pancreas.  I was going over every word that I had heard over and over again.  But I had to get through the rest of the day.  Pack up our friends Wendy & Jason who came in for the conference, deliver them to the airport, switch into mommy gear and off to the basketball game with my peewee cheerleaders.  All the while, it never left my mind.  I had to work really hard to keep my emotions in check while I did my mommy duties.  Monday morning, all three kids were delivered to school and then I let my brain go there again.  I was home, alone, catching up on laundry...and bawling at the possibilities that lie ahead for my daughter.

It's through Children With Diabetes that I realize I'm not alone.  That we are not the only ones tormented with the burden that diabetes places on our child.  It was this CWD conference that restored my HOPE!  Ed Damiano is just like Keith and I.  (Ok, well HE is brilliant!, but I digress...)  What I mean is that he knows the same burden.  The burden that diabetes places upon his son...this is what motivates him.

I believe in him.

I got goosebumps when Ed began to speak at the closing keynote.  The first slide of his presentation said "Making Diabetes Management Disappear..."

He continued to explain how the bionic pancreas will work.  This technology does not require the person with diabetes to even know what their blood sugar is.  No counting carbs.  No adjusting basal rates.  The system makes decisions about how much insulin or glucagon should be given without the user's input.  It is completely autonomous.

Ed talked about the clinical trials.  Watch this amazing video about one of his out-patient trials.

.


He talked about results of these trials.  Amazing results!  In a 5 day experiment in adults with type 1 diabetes - walking around Boston not thinking about diabetes, they were able to achieve an average blood sugar of 131.  What was just as amazing to me was the fact that, in all 20 subjects, they experienced blood sugars below 60 less than 2% of the time.  BGs below 120 - 60% of the time.  And BGs below 180 close to 90% of the time.  This was only a five day period, but the predicted A1C for these folks would be 7.1%.  And remember, this was the bionic pancreas working autonomously.  They didn't have to think about diabetes at all!

I was already cheering him on at this point.  But, it was when he spoke about the emotional aspect of this technology, this is when the uncontrollable tears flowed for myself and Wendy (and many others as I looked around the room).  He said,

"It will be a whole different world for people who have been living with diabetes.  They will not take this for granted."

I encourage you to click these links and learn about the bionic pancreas.  I encourage you to follow the clinical trials and ask questions.  Years ago when I heard "artificial pancreas" talk, I blew it off.  It sounded like another empty promise of a cure.  I have now done a 180 in my thinking.  THIS is it!  This is a game changer for people living with diabetes.  It is NOT a cure.  But I believe until there is a cure, THIS will be the BEST option for my daughter.  It will "unburden" her life.  No, diabetes won't go away for her.  No, the need to be cautious won't go away.  No, the need to wear a pesky medical device to keep her alive won't be gone either.  But the day to day burden of managing diabetes will be taken off of her shoulders.  This "unburdening" is what makes me cry.

I want this for Ally.  I want her to experience this "unburdening of D."  

I believe in Ed Damiano!  I have hope in this research!

Listed below are a few links to resources about the bionic pancreas.

Resources:
http://www.bu.edu/bostonia/summer13/damiano/
http://www.artificialpancreas.org/
http://boston.cbslocal.com/2013/09/04/diabetic-children-test-bionic-pancreas-at-mass-camp/
http://www.youtube.com/watch?v=06rpdVs0okE&feature=share


This post is part of a series documenting Ally's experience as a participant in The 2014 Bionic Pancreas Camp Study.  

READ MORE:

3..2..1..GO BIONIC!

MY HEART SWELLS

MESSAGE IN A BOTTLE

BIONIC: SUPERHUMAN? NAH, JUST SUPERHERO!

TODAY I REJOICE!

AFTER THE BIONIC PANCREAS

I WISH IT WERE THREE YEARS FROM NOW

In Loving Memory of Shamae and Her Crazy, Happy Life!

This is an impossible post for me to write.  It feels impossible because I feel like I'm writing something that just can't be real.

Shamae passed away in her sleep.  I read those words on Sunday and have been trying to come to terms with it since.

Shamae and I first met online in early 2010 through a group of Dmoms.  It had been just over a year since Ally's diagnosis with Type 1 Diabetes.  I had spent the first year after diagnosis just getting by.  Shamae reached out to me.  She encouraged me to start a blog of my own.  She gave me courage and hope...in 2010 and ever since!

We continued to get to know each other through reading each other's blogs, written mostly about our families living with diabetes.  We connected because our daughters with type 1 diabetes were the same age.  Syd and Ally became pen pals and it changed the way that Ally looked at diabetes.  She felt less alone.  Funny, because that's exactly what my friendship with Shamae did for me.  I felt less alone.

 My very first blog post Celebrate You, was dedicated to Shamae.  She played a major role in moving me from the overwhelmingness of that first year to learning to live again, just in a different way.

I am inserting an excerpt from that first blog post because I was speaking specifically about Shamae.

 I want to celebrate that so many of you have reached out to me, welcoming me into this group of people who understand what our life is like. I want to celebrate that some of you forced me, ok...encouraged me to write this blog. I think it will help.

In fact, it already has. You see, I was only introduced to you and your blogs a couple of weeks ago. Once I started, I couldn't stop reading them. As I read some of them, I felt like you were writing the thoughts right out of my head. Others were compelling, some were shocking! I have smiled, laughed and cried at your blogs.

Ally noticed that I couldn't pry myself away from the computer and she asked me what I was reading. I explained that I was reading about other families who have children with Type 1 Diabetes. She was interested. "Mommy, can I read it too?" So I let her write a note to a couple of girls her age. She received a note back from both of them and is ecstatic! (Thank you ladies!) She wants to know all about them. She made me print their notes and she ran to find an old binder that she could keep them in. They were so special to her that she would not let me punch holes in them, so we had to find page protectors! She is scheduled to be Star of the Week in her 1st grade class in a week or so. She has been waiting for her turn for a long time and has about 20 "special" things that she wants to take in to share. This afternoon she told me that her MOST special thing is now her binder with her "new friends" in it and she can't wait to take it in to share with her class. :)

So, again, let me CELEBRATE you! Connecting with others who understand is already making a difference for me...and even better, for Ally!!

Shamae, thank you for sharing your life with us.  You were an inspiration in many ways.  I admire the way you lived your crazy, happy life.  I admire your passion for being a mother and a wife.  I remember that you once wrote "Being a mom is so fulfilling."  I admire your dedication to educating others about Type 1 Diabetes...your dedication to finding a cure...your dedication to making a better outcome for Syd and all those with Type 1 D.  I will always cherish the "Why We Do It" video that you made because I know how much love you put into making that.  (Video has a permanent home on the bottom of my blog!)  Thank you for being supportive to me and lifting me up when I needed it most.  You will always have a special place in my heart.      

A friend of mine saw my post on facebook and said, "You know I can't help but believe that God has a bigger plan for Shamae.  What if she can do more on the other side?"  I believe that Shamae has earned her right to fly among the angels...because to me she was an angel on earth.  I bet she even asked to have a blue circle on her angel wings :)

Shamae made an impact on so many lives.  I believe she will continue to do that.  I miss her presence here on earth already, but I will never forget her!

Join me today in once again, Celebrating Shamae and her Crazy, Happy Life!

A 10 year old's review of Superstar Dreams

As you probably know, Lilly Diabetes and Disney partnered to create a series of books about kids living with diabetes.  In case you have not seen this series, or if you'd like to see the newest books added to this collection, visit Lilly and Disney's Type 1 Diabetes Book Shelf page.

While at the Children With Diabetes, Friends For Life conference in July, we were lucky enough to receive a couple of the new books in the series.  Ally very quickly read Superstar Dreams and wanted to share her review with you.

Superstar Dreams

           Summary

This was a GREAT book. It was about a girl named Morgan who was newly diagnosed with type 1 diabetes and had trouble making friends at her new school.

 When she finally met Lizzy and those 2 became very good friends, Lizzy’s BFF, Naomi, suddenly didn’t like her because she thought that she was trying to steal her friend away from her.

Her new friend has a sleepover birthday and she can’t decide whether to go or not because she isn’t sure she feels comfortable going because of her diabetes.

  Eventually everything worked out and Lizzy, Morgan, and Naomi all became VERY, VERY, VERY, good friends.

 

            How I can relate to that

 She doesn’t check her sugar at night but her lows are a lot worse than mine and she feels them when she is asleep.  In the book it says that Morgan feels light-headed and it feels so bad. I check my blood sugar at night no matter what.

I would love to go to a sleepover but my Mom would be the one who wouldn’t feel comfortable. I’d feel comfortable because I know how to manage my diabetes well and I have lots of good friends comfortable with it who would help me with my lows.

Love to tell you more but don’t want to spill the beans. :)  If you want to know more, then you may like to read the book yourself. ;D

I was going to add my two cents here, but I think I will save it for a post of my own!  I will translate one line, for the record!  "I check my blood sugar at night no matter what."  Actually means, "Mom or Dad check my blood sugar every night!  :)



(To read Lilly & Disney's summary of this book, click HERE.)


We are grateful to Lilly Diabetes and Disney for giving us our very own copies of a couple of these books.  If you have not been able to get your hands on any of these books, check out T1EverydayMagic.com where they will soon be adding digital versions of some of these titles.

You may also like to visit www.spoonful.com/type1 for tips on family life with type 1 diabetes.

Saturday Diabetes Art

This year Diabetes Art moves up from the Wildcard choices as we all channel our creativity with art in the broadest sense. Do some “traditional” art like drawing, painting, collage or any other craft you enjoy. Or look to the literary arts and perhaps write a d-poem or share and discuss a favorite quote. Groove to some musical arts by sharing a song that inspires you diabetes-wise, reworking some song lyrics with a d-twist, or even writing your own song. Don’t forget dramatic arts too, perhaps you can create a diabetes reality show or play. These are just a starting point today – there are no right or wrong ways to get creative!

This was easy.  Ally made this in Art class at school this year!  Do you recognize anything??

This has been my post for Day #6 of Diabetes Blog Week.   Check out some other amazing D-Art here: Diabetes Art - Saturday 5/18.

Accomplishments Big and Small

We don’t always realize it, but each one of us has come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

Yes, we've come a long way since Ally was diagnosed with Type 1 Diabetes on February 10, 2009.

Let's Celebrate!  I don't ever expect us to be perfect when it comes to managing D.  But I certainly think that it is important to celebrate the small stuff. 

Ally celebrated the day that her CGM arrived in the mail.

 

 

 

I celebrated on the day that Ally returned from a week at Diabetes Camp!

 

We all celebrate a beautiful flat line on her CGM graph.

(Wendy likes to celebrate 123!)

 While I celebrate every time that our cgm and blood glucose meter match!

We celebrate the birthday of Sir Frederick Banting, the man who discovered insulin.

 

 In our world, this "small stuff" is pretty outstanding!

Our BIG accomplishment of this year has been writing and implementing Ally's 504 Plan at school.

I have talked about how wonderful our nurses and staff have been to work with many times.  Honestly, until this year, Ally's needs were being met even without the 504 plan.  I have known for a while that I should have one in place for her and my goal has always been to have one before she went to the Intermediate building (6th grade) where she would have multiple teachers.  After our frustrating go at Standardized Testing earlier this year, I knew that it was time to initiate the 504 process.  I am very happy with the 504 that we developed along with her teachers and school staff.  By the end of year state testing, I was like "Bring it!" :) 


This has been my post for Day #4 of Diabetes Blog Week.   Please take a minute to check out the other great posts about  Accomplishments Big and Small -Thursday 5/16.