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Forget Me Not!

Two years ago this February I was asked to be our local chapter’s Advocacy Team Leader.  At the time, I had no idea what that entailed, but I knew it was an honor to be asked and I made a promise to do whatever I could to help find a cure for my grandson..so the answer was a no-brainer “Yes”!

It was the middle of JDRF’s Promise to Remember Me Campaign and part of my responsibility was to schedule the “Promise” meetings with our congressmen.  I was able to schedule and meet with 2 of our congressmen.  I was so nervous, but both of those meetings were also attended by a few long time JDRF advocates who helped relieve my apprehension a little.   We shared our stories of living with diabetes, asked them to approve the upcoming Special Diabetes Program, thanked them and the meeting was “in the books”.

A month later I went to Washington DC as Orange County’s representative for JDRF’s Government Day!  One of the first people I met was a young mom from Central California.  She told me about the great “Promise” meeting she had with her Congressman and she told me something else that really stuck with me.  During that meeting, her young son gave his congressman a package of Tic Tac’s and explained to him that those are what he has to eat when his blood sugar is low and he gets shaky!   It was a visual reminder for the congressman to remember him!  Thank you Promise Co-Chair Laurie DeSchryver for sharing that story with me!!

For this Promise Campaign I realized we needed to help all of those voting on our behalf  REMEMBER US after our meetings as well!  My grandson Robby, and the reason for my passion, is now away at college and knowing that he would not be able to attend our Promise Meeting with his congressman.   I wanted to make sure that Congressman Campbell remembered him when he went back to DC and cast his votes so….

Flat Robby and his mom went to the Promise Meeting!

We have taken Flat Robby to 3 Promise meetings now and he has been a big hit at each one!  (Oh, and thanks again Laurie for bringing your Flat Grandma to Government Day last year, another inspiration )!

However, all of the members of congress need to REMEMBER ALL OF OUR LOVED ONES living with diabetes and so with a little help from our

 Silly Hats & Caps Advocacy Group

 we came up with several “leave behind” ideas that we now use and I have been asked to share them with you!!

 We made a bouquets of fabric flowers

 Each flower has the face of one of their constituents who is living with Type 1 Diabetes on one side

And simply ask them to remember on the back!

Promise to

Remember Me!

Caroline

We use a sneaker as the vase, to remind them of JDRF’s Walk to Cure Diabetes!

We have one of the children carry the bouquet and start the meeting by giving it to their congressman.  It helps break the ice and get the conversation started!

I always ask the children attending the meeting if they would like share how they manage their diabetes with the congressman (show off their pump, test their blood sugar, etc).  That too seems to really grab the “members” attention and is a GREAT OPPORTUNITY to teach someone else more about diabetes!

Once the kids have broken the ice for the rest of us….the adults share their stories of how diabetes has affected their lives…as a person with Type 1, as a parent, as a grandparent etc.  At one of our meetings one of the mom’s emptied her purse on the table to show ALL OF THE SUPPLIES she had to carry 24/7 to manage her daughter’s diabetes and have on hand just “in case”!

We always check ahead of time to see if the member is on the Diabetes Caucus, or if they signed the FDA letter, or if they voted for the SDP, etc. and thank them for doing so.  If we have an “ask” we explain what we are asking of them and we leave a packet of informational material that JDRF has made available.  In that packet I always include a page that my grandson wrote the year after he was diagnosed..

Facts about Diabetes

In one day, I test my blood sugar 12 times

In one month, I will test 372 times

In one year, I will test 4,464 times

In my lifetime, I will test at least 424,080 times

I inject insulin into me 5 times a day

In one month, I will inject insulin 150 times

In one year, I will inject insulin 1,825 times

In my lifetime I will inject insulin 173,375 times

 As many as 3 million Americans may have Type 1 Diabetes

Each year over 13,000 children are diagnosed with diabetes in the U.S.  That’s 35 children each and every day!

Diabetes remains a leading cause of heart disease, stroke, blindness, kidney disease and amputations.

Please Help JDRF

 Find a CURE

My daughter-in-law came up with another awesome “leave behind” that we started using for our walk team, but are now using with Promise and other activities as well.

We take lifesaver candies,

attach a picture of someone in our chapter living with T1d and simply say..

Be a lifesaver and help find a cure”

These “Promise” meetings are so important to help put a face to Type 1 Diabetes.  If we can influence even one congressman’s feelings toward diabetes, it could mean the difference in the approval of funding of millions of dollars towards research.  The meetings last no more than 15 to 20 minutes and if we can leave something with them that will continue to remind them what we’ve taught them in that short time….we truly are making a difference!

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Filed under Advocacy, Government Day 2011, JDRF Walk to Cure, Promise to Remember, Silly hats and Baseball Caps

Silly Hats and Caps Update!

Last April I wrote about how some of our friends and I had decided to form a sort of advocacy group called the Silly Hats & Baseball Caps.  Well we’ve been meeting for breakfast every Tuesday Morning since then and have we been busy!

With Bob’s surgery and all, I am way behind in filling you in on what we’ve been up to.  But it is high time I start sharing some of the things we’ve accomplished!

  • First of all we have shortened our name to “Silly Hats & Caps”!
  • We have a purpose:

We are trying to make a difference

While having fun

Chatting, Laughing

and finding a Cure for Diabetes

  • We have a face book page http://www.facebook.com/pages/Silly-Hats-Caps/230127823715355  We would love for you to “like us”!
  • We hosted our First Annual Garden Party  http://wp.me/p1qABL-iT
  • We organized and held our First Annual Peanut Butter & Jelly Golf Tournament  http://wp.me/p1qABL-hD
  • We held a bowling get together for family and friends with diabetes  http://wp.me/p1qABL-ko
  • We have made 40 centerpieces for the JDRF Walk Kick Off Luncheon (and are also using a version of them as “leave behinds” for the JDRF Promise to Remember Me meetings with our congressmen http://bit.ly/GA8DWj
  • All of us Silly Hats got together for a wonderful Holiday Party
  • We met at the beach for a little exercise and a great lunch on the Pier
  • We collected favorite recipes from family, friends and JDRF Advocates and put together a Cook Book that we are selling with all proceeds going to JDRF!
  • Our local chapter did a write up on us in their monthly newspaper.  You can check it out here:  http://wp.me/p1qABL-iH
  • We volunteer at health fairs and other events sharing about JDRF and the need for a cure for Diabetes

In the next few days I hope to get you all caught up with more of the details of some of these things we have done!

I have to tell you that not only have we, as a group, accomplished so many things, it is wonderful to be able to meet every week with friends and know that you can laugh  and cry  and hug and share with others just because!!  Just like the DOC, but in person!

When Bob was in the hospital…they were all there, right by our side, laughing, chatting, and praying!  We are eternally grateful for our wonderful SILLY HATS & CAPS!

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Filed under Advocacy, Government Day 2011, JDRF Walk to Cure, Promise to Remember, Silly hats and Baseball Caps, Spreading Awareness

Set Free

I started my morning reading a beautiful post from Our Diabetic Life in 3D titled ” Diabetes is a Sailboat”.  http://www.ourdiabeticlife.com/2011/07/diabetes-is-sailboat.html  It’s a story about how having a child diagnosed with diabetes is like putting your child in a sailboat and watching him set sail alone on the high seas.   Meri is a fantabulous  writer and mother of 4 boys, 3 of  them have Type 1 Diabetes.

And after I cried through Meri’s post, , I visited my facebook page….one of my “friends” Melinda had posted a link to a beautiful youtube video about one family’s struggle to set a young whale free from fishing nets.

As I watched that video, http://www.youtube.com/watch?v=EBYPlcSD490&feature=share

I couldn’t help but relate Meri’s blog and the Fishbach family’s challenge of freeing the whale, to the challenge that all the men, women and children who have diabetes also struggle with.  Just as this whale was trapped in the fishing net, they are tethered to diabetes.   As new and better treatments are discovered, it cuts away at the net and allows them a small taste of what it’s like to live life without diabetes, but until the entire net is removed they will struggle to manage their disease and will not be truly free.

I hope and pray that I will live to see the day when my grandson and all of you, who so bravely battle day in and day out,  can  live without needles and pumps and tubing and meters and testing blood sugars and highs and lows and complications from this crappy disease and can breach and tail slap and fin slap, (or dance and sing and shout, if you prefer)  just as the whale did when it was freed!

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Filed under Grandchildren, Hope and Health, Uncategorized

Sister’s Tender Moment!

This was a very big week for our family.  Our first grandchild graduated from high school yesterday.  He graduated with honors,  an academic scholarship and an athletic scholarship to play baseball for the college that was his Number One Choice!   He did this with NO HELP FROM DIABETES OR CELIAC DISEASE!

His parents were having a graduation party at one of his favorite Mexican Restaurants and my grand daughter (his little sister) called me and asked if I would help her make a cake for the occasion!  No brainer, of course I would love to help!

Mind you, most of the time, the two of them can not stand to be in the same room with each other!!  She says  “He gets all the attention….it’s always about him” . He is always teasing her and says “She is so spoiled, she gets whatever she wants” and so on and so on!  You know, that whole sibling rivalry thing!!

So anyway, she comes over and begins to tell me what she wants to make for her big brother.  And she melts my heart!

You see, he has not been able to eat cake like everyone else since he was 11 years old and in addition to his Type 1 diabetes, was diagnosed with Celiac Disease.   Whenever we have birthdays or other events where cake is served we alway make sure he has a gluten free cupcake or some other gluten free dessert.  But because this is a really special day for him…his sister wants to make him the gluten free cake and make regular cupcakes for everyone else!!  Oh, and not just any old gluten free cake but a 4 tiered gluten free cake!!   I am choking back the tears by now!  At that moment, I couldn’t be more proud of her!  What a very special grand daughter I have!

The day of the graduation party was also our third grandchild’s birthday and she wanted to make sure she made him something as well.  So after I pick all of them up from their respective schools,  I take her and our 2 younger grandsons to the cake decorating store and we pick out decorations for her “vision”  and our birthday boy picks out what he wants on his special cupcake!!   She and I then spend the evening baking all four gluten free cakes and we bake 18 regular cupcakes.  She has heard that it’s easier to frost if we freeze the cakes first…after the last of the four cakes has cooled we put them in the freezer at about 11pm and we head off to bed!  (She’s spending the night because she has no school the next day and wants to get an early start to the decorating!)

So up we get and one by one we remove the layers from the freezer and frost them and stack them on top of each other!  Then the cupcakes are frosted and a little frosting is put on the bottom of the wrappers so they stay secured to where she puts them.   Finally…she is ready to add the decorations that took her over an hour to pick out!

I’ll let you decide for yourself…But I doubt that anyone would be able to buy a more beautiful graduation cake or a cake made with more love than this one (let alone a gluten free one)!!

This Grandmother is so very proud of all of her grandchildren.  Being a grandma is the best thing in the whole world!

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Filed under Baseball, Grandchildren, Sports

Our Walk to Cure Diabetes

Every year, since my Grandson was diagnosed,  we walk with the Juvenile Diabetes Research Foundation in hopes of funding research to find a cure.  We will continue walking until  a cure is found, but while we are on this journey…WE WILL MAKE THE MOST OF IT !!

Our first walk

My precious ones at 2005 walk

Awesome Team Strike Out Diabetes!!

D follows everywhere...Grr

Our sneaker wagon


Oh my!!

Crusin'

Walk at UCI

Havin' some fun!

Me and my best bud's!! Oh and Elmo too!

Winner, winner, chicken dinner!!

With a little help from my friends!!

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Filed under Baseball, Grandchildren, JDRF Walk to Cure, Uncategorized

OMG! I’ve been a Gramma 18 years TODAY!

Today my first grandchild turns 18!!

I have to tell you that all the things you hear about grandparenthood are absolutely true!  Don’t get me wrong..Becoming a parent is certainly one of life’s greatest joys, but multiply that by 10 and that is what being a grandparent is like!!   I am blessed to have 4 wonderful grandchildren so multiply that times 4!!   That’s 40 times more wonderful than being a parent!!   How incredibly lucky I AM!

HAPPY, HAPPY BIRTHDAY ROB!  Thank you for giving me joy I never knew existed!  Thank you for giving me happiness I didn’t know possible!  Thank you for becoming such a source of pride!  Thank you for being so much stronger than your grandma!  Thank you for being such a wonderful role model for all of us to follow in learning how to deal with life’s adversities!

Today is ONE DAY CLOSER to your Cure!

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A 90’s Rock Band

Today is my 1 month anniversary of being a blogger!!  One of the first blog’s I read when I got home from Government Day(s) was talking about this great 90’s band called Blunt Lancet!!

 VH1 Behind The Music:

Blunt Lancet

by Texting My Pancreas’

Kim Vlasnik

Since I have a 17-year-old grandson with Type 1 whose birthday is next week, I thought I’d be really cool and do a little research about them and buy him one of their albums and a t-shirt!  I found a website that was selling their t-shirts, but as hard as I tried,  I could not find any of their music on-line.  Amazon, itunes, MP3, even Walmart and no succcess…Time was running out if I wanted to be able to give him any of their songs for his birthday gift.

Then this morning I was working on my twittering (oops, I mean tweeting)and I see a tweet from Kelly Rawlings… with a #bluntlancet and a website http://yfrog.com/h4heijzj..so click on the link and I see my hero Scott who set me up with my blog and he’s got a Blunt Lancet mug in his hand…I should be able to get in touch with him and he can tell me where I can find their music!   But I didn’t want to bother him if I didn’t have to, so I went back to the tweet and clicked on the #bluntlancet…(I’m learning!!) and started reading some of the other tweets…How come the entire DOC knows about them and I can’t even find out what songs they sing?,

Then I somehow get to the lyrics of  a song they wrote for Christmas.  Christmas music isn’t exactly what I had in mind for his birthday gift..but I’m getting closer..And then, one of the links takes me to a blog by Diabetes Mine and I start reading the names of the band members…Kim Pancreas, Simon Syringe, Moby Testkit, Kelly Rawsugar, Jeff Lancer.  Hmmm, something’s kind of fishy

..and then I read the words “completely fictitious rock band borne from the crazy/creative minds of some DOC members”

I fell hook, line and sinker!!  Guess I’d better get busy with Plan B for my grandson’s birthday present!!

 Yep, you all got me good!

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