Day 1

It was a very busy day yesterday!  We started out early with a photo shoot. All three of them were chosen to be featured in some JDRF media things- thank you's for sponsors, a Build-a-Bear promotion and an interview about being a family with T1. They were awesome! We got a little break mid-day and the girls and Troy went out to eat while I stayed at the motel with TJ to get his much needed swim time. The afternoon included a song with Crystal Bowersox, more pictures-with Crystal and Gary Hall,Jr- and finally a banquet. On one of our elevator rides met Ray Allan and his son, Walker, who has T1. It is really humbling to see that many children with T1 in one space. Children diagnosed as early as 11 months old and some later in their teens.

 

After the banquet we had some time to walk down the the mall. What amazing sites!  TJ was in awe of the Lincoln Memorial. He is his favorite president!  Tylie was just in awe and Taya stated she has a "respect for history."  Dad made them stop for a lot of pictures so by the end of they day they said their smiles were frozen!  Another unexpected highlight walking back to the motel was seeing the Presidential motorcade.  

TJ woke up this morning singing The Promise song and taking about how awesome yesterday was. We can't wait to see what today has in store!

We Have Arrived

It has been a long day but we have arrived!  Our day began at 4:30 AM with a flat tire on the van. Good thing we were flying!  https://vine.co/v/h7BHTr59APU

We have ridden on 2 planes, eaten in 3 states, ridden a train and a taxi, toured sites, walked a thousand miles and now have a boy in meltdown mode!  Hoping a good night sleep brings him back around!  

The trip has a different feel than our usual destinations. TJ is rather disappointed there are no hockey or baseball games involved and the girls just want to experience everything all at once.  It has been interesting to see other families arrive and to note the far reaching pact of diabetes in the country. In fact, we ate at a restaurant in Georgetown called The Tacklebox. The server asked why we were here and after Troy told him, he said his mom had diabetes and have us our drinks on the house. Being here, the epicenter of our democratic government, gives a different perspective on how lucky we are to live in a country where we can have this chance to have a say in our lives. 

Road to Washington, DC

In less than 48 hours, we will be in Washington, DC.  Well, 5 of us will.  Tessa will be in Nebraska.  She is going to spend the week with her aunt and family.  While running errands and organizing everyone, it occurred to me that,  for Tessa, this trip will be the first time in her lifetime she will be totally away from Diabetes.  She doesn't have diabetes but she lives it.  It makes me sad that I don't get to share the "freedom" with her but I am so excited for her.  A full week without hearing, "Are you high?" or getting to eat at a restaurant without worrying about carb counts and the presence of gluten!  However, it also brings to light the importance of what we are doing in Washington.

Here is a link to the brochure for the Special Diabetes Program.  http://advocacy.jdrf.org/wp-content/uploads/2013/03/5-SDP-Brochure-final1.pdf   When the kids meet with our state's members of Congress, we will be speaking to them about how T1 Diabetes impacts their lives every day.  They will request funding to continue for the SDP because it has made a difference.  Type 1 Diabetes is increasing at a rate of 3% annually.  It isn't something that can be ignored.  But, neither is the progress that has been made in  the areas of science and technology.  How cool would it be if ALL of my kids could take a vacation from Diabetes?  If other children could never get Diabetes?  If there was a cure instead of just a treatment?  And, that is the premise for the work that lays ahead of us next week. Stay tuned for updates through the week, or if we get too crazy busy, you might just have to settle for the summary.

To give you an idea of what traveling with T1D is like, I have included a picture of the kids' extra supplies.  This is just extra food, strips for meters, extra meters, syringes, insulin, set changes, glucagon, insulin, batteries, glucose tabs, etc..times 3!   It doesn't include the stuff they keep with them.  To prepare, today I went to the pharmacy, Target, the grocery store and the gluten free store.   In contrast, Tessa's pile includes a suitcase and an extra pair of shoes.  Not to minimize the travel preparations of any family, because I know it is a lot of work taking kids places, but the only thing I needed to buy Tessa was some new elastic bands for her hair!  

Which brings me back to the question:  How cool would it be if there were a cure?  I posted on FB to the group of Bismarck/Mandan families with T1D.  I told them that we are taking them all with us in our hearts because they won't fit in our suitcase.  I hope they realize how true this is- because this isn't our battle alone!  On a side note I am sure these mommies will appreciate,  I was so wrapped up in the writing of this post, I just set the fire alarm off boiling water!  A vivid example of how Diabetes can interfere with the most mundane activities, even indirectly!

Ordinary Extraodinary

My friend, Jenni, talked me into going to a two day class this week.  She didn't have to twist my arm too hard as it was a class about writing.  The timing was good and I thought it would be just what I needed to re-frame my teaching mind from special education to regular education.  The first day, we walk in to find the table scattered with objects: tape measures, matches, hair ties, band-aids.  Really, just ordinary things.  The prompt was to choose one of those items and write about it for 20 minutes or so.  I picked the band-aid.  Honestly, going in, I had no idea what would be the final product of this little writing experiment.  I figured I would come up with something funny as I would have to share it with these people and I didn't even know them.  My innate sarcasm usually helps me out in these situations.  It certainly wasn't the time to go deep. But, as I put that blue pen to paper, it seemed out of my control,  this story that emerged.

We called her the Band-aid Queen.  She lay reclined on her hospital bed throne wearing a crown of blonde curls and a smile, despite the tubes attached to her tiny arms.  Next to her, the ever present IV pole stood like a sentry standing guard.  Every two hours, came a person in brown scrubs pushing an ominous looking cart full of stuff.  The little girl sat, brave and stoic, while the person poked her finger and milked a drop of blood.  The drop registered on a machine to tell us if her blood sugar was high or low so we could determine our next course of action.  The little girl didn't care why, to her it just hurt.  That is until the person in brown smiled and offered her a Band-aid.  The smile returned to her face and her eyes lit up as she chose bright pink to compliment the yellow, green, and orange already adorning her delicate fingertips.  To her, that pretty little Band-aid made things all better.  To me, that Band-aid was resilience.  

Thirteen years later, I am watching that Band-aid Queen, her blonde halo still intact, struggle with where to go next in her life.  I wish that a simple pink Band-aid would return her twinkling giggle and her confidence in life.  Despite the knowledge that this time a Band-aid can't literally, "make it better,"  there is comfort in the knowledge that resilience still stands guard.  

That is what I read to the group, feeling slightly embarrassed.  The writers before me were humorous and fun.  I have no idea why these thoughts had chosen  now to flow like a river in front of virtual strangers!  But, that is the magic of writing and maybe even life, isn't it?  You just don't know the stories you can tell.

As a side note, Tylie chose her college today and decided to attend BSC for a year. She has huge hopes and dreams and can't wait to get them started.  It was difficult for her to start small and stay at home for a year.  Her fingers are no longer decorated with colored Band-aids but she wears her resilience like a badge.  I can't wait for the rest of her story!

I Run...

I run- sometimes a couple of times a week, sometimes more.  My reasons for running are probably different than they are for the average "runner" you see going around the Y.  And, let's be honest, I sure don't look like a runner!  So, why do I do it?

Today, I ran because before 9 AM  I had taken my son for a blood draw, gotten a text from a very frustrated T1 D mommy friend, changed a site and argued with a daughter about changing hers.

Today, I ran because in the last 5 days I have received a text from a friend about an 8 year old in her town that has just been diagnosed, a text from another friend diagnosed with gestational diabetes, and learned of an 8 year old girl who died from undiagnosed Type 1.

Today, I ran because in a couple of hours two of my T1 kids and I will sit with a team of health care professionals and pretend to be a pancreas and make some "educated" decisions with regards to insulin and carbohydrate ratios at certain times of the day in relation to hormones, activity, and the alignment of the moon.

Today, I ran because in a couple of weeks my other T1 kid will sit with that same team and we will repeat the process with hopefully better results than we have had for the past 2 years.

Today, I ran because my newly graduated daughter left for her blood draw by herself and it that was more emotional than the actual graduation ceremony.

Today, I ran because that same daughter will be going to college in less then 3  months and living with a stranger who will have no idea what to do when she stumbles across her roommate with her hand in a box of cereal surrounded by 3 empty juice boxes, 2 fruit snacks, a half a peanut butter sandwich and a granola bar and no idea how she got there.  A marijuana high would be the wrong guess... a blood sugar low, the correct one.

Today, I ran because I dread the results of those blood draws.  The A1c is a measure of glucose in the blood over time, however,  it frequently feels like a judge handing down a judgement of our parenting.

I run because there is really a lot of noise in my house and it is the only time it is quiet.

I run because if I didn't I would cry...a lot and all the time.  Running tends to take edge off and I can get mad enough to find a more productive outlet or I can find peace enough to let go of the small stuff.

 I run by myself when I am really frustrated or I run with friends when I need a perspective beyond the little videos that thread nonstop through my head like that new Vine app!

I didn't really want to keep going on my run today.  Then, I got a flash of TJ running in the Color Run this past weekend.  That little stinker ran 5K with barely a walk break and no training while wearing an insulin pump.  And Tylie, woke up with a ridiculously high blood sugar and fought through it to get it to an acceptable level to participate.  And Taya, who frequently reminds me that every bad mood is not necessarily diabetes related (it just feels like it!) And Tessa, who doesn't get to go with us to Washington.  Some days I really dislike running.  But, everyday, I really dislike diabetes.

So, I run.  I am trying to convince my frustrated T1 D mommy friend to run in the 10K portion of the Twin Cities Marathon for JDRF.  I'd go for the full but I did a half once and that about put me over the edge with training.  A 10K, I can do, especially for diabetes.   Anybody with us?

CC2013

Getting invited to attend Children's Congress is a great honor.  And, as it turns out, a lot of work!  I have gone outside of my box and created a scrapbook and 3 videos.  All are attached here!  Proud of these kids- and not just mine!  D- kids live life with a grace and a resilience I can only find inspiring!

http://www.youtube.com/channel/UCJTrzhpX_FmWkX5n7icIm5w

http://smilebox.com/playBlog/4d7a597a4d5455344e6a633d0d0a&blogview=true

Look at the Ducks!

I follow a page on Facebook called "Type 1 (Juvenile) Diabetes Facts and Information".  She posts really good information as well as some really funny stuff.  She told me she finds the pictures searching on Pinterest when I asked about using this one here.  The image of this made me chuckle out loud.  Just this morning while walking to my car, I counted 4 test strips in the driveway.  Seriously, the driveway!  How does this happen?  They were not there yesterday!  They are so commonly seen laying about that even my husband notices them.  He came home from the baseball field on Saturday and stated he had encountered a first.  There was a used test strip at the baseball diamond and it wasn't ours!  At least we are not alone in struggling to get these little suckers to the garbage can!

But, funny image aside, I found the ducks symbolic in another way.  Way back in 2000, when I first heard the news of Tylie's diagnosis, my mind had immediately gone to the "horrible change" that had just happened to our lives.  It was like those ducks in the picture were dive bombing me with "what if's" and "OMG's" and none of them were good revelations.  I am going to spare you and myself the details of all those imagines because I don't like to visit that place in my mind.  Suffice it to say, those images are also why  I won't watch the movie Steel Magnolia's.  Instead, I want to look at the ducks a different way. 

When putting together our scrapbook for JDRF CC13 this summer, there was a lot of opportunity for reflection.  On Tylie's page, she wrote that she "tries to be a good example for her younger siblings."  And, she is in so many ways.  She recently participated in a competition for DECA (a business, marketing club) and qualified for Nationals for the second time.  Just this week, she won an event in a state journalism competition.  She student manages for hockey, babysits for other families, works polls in elections, and plays soccer.  She will go to college next fall and dreams of studying abroad.   Diabetes does not slow her down and she never fails to find the humor in it.  I can't help but to think all of these experiences will make her an amazing advocate in July.  Taya on the other hand, HATES diabetes.  There is rarely a day that goes by that she does not curse it.  For her, finding the positive is a battle she fights everyday.  At the same time, it doesn't stop her from living her life.  She plays hockey and will be inducted into the National Honor Society this week.  She studies hard in her effort to become a pediatrician.   She recently got a job in a nursing home as a step toward her career in health care.  While her approach to advocacy may not be as vocal as her sister's,  I have no doubt she will have an impact on people's lives.  TJ is an example of  a kid that that truly "lives out loud."  He never stops moving (or talking).  He plays hockey, baseball, football and soccer.  This weekend he was on his bike or jumping on the trampoline every chance he could.  His dream is to play hockey in the NHL.     (Ironically, the Ducks are one of his favorite teams.)  He does all this, pump attached, without skipping a beat.  His older siblings have taught him well and he is not afraid to tell others about what that thing is attached to his hip or why he has to poke himself before he eats.  His confidence makes everyone around him confident.  That was evident when I dropped him off at a birthday party this weekend and in the middle of me giving the parents my standard speech, the little birthday girl says, "It's okay, I know all about his blood sugar.  I'll watch him."   

One of my favorite quotes by an unknown author states, When the world says, "Give up," Hope whispers, "Try it one more time."  I choose to look at those ducks- that endless trail of test strips- as hope.  In our house we use an average of a little over 100 test strips in a week.  That is over 100 finger pokes and each one of them to me symbolizes hope and promise.  Hope that someday finger pokes will not be necessary and promise that until that day comes, we have options and opportunities.  I will do my best to be sure my children see their life for the gift that it is.  As a family, we will go to Washington and speak out about Diabetes.  We will be there physically, but we will bringing in our hearts all of their "brothers and sisters" who have fought this fight before them and who are fighting it today and for those yet to know the challenge.  Let's face it, some days are just hard and the easy thing to do would be to give up.  But, something within these resilient kids makes them get up and keep trying.  For them, I will gladly pick up a million test strips- bring on the ducks!

Excerpt from scrapbook for JDRF CC