Monday, July 22, 2013

We did it!

Photo: We have an adult!  Happy 18th birthday, Tylie Olson!

Well, we did it- we got one of our offspring to adulthood! Whew- it's a lot harder then they make it out to be when you read the "What to Expect" books when you are 8 months pregnant.  I notice they quit writing those after "The Toddler Years."  Is that because it is basically a dice roll every single day?

For example, I remember at age 18 months, the first time Tylie got really sick and projectile vomited EVERYWHERE.  I could do nothing but surround us in towels and hope the volcano would stop.  I clearly remember thinking to myself while holding back the gags, "They do NOT tell you about this stuff in the books!"  Then there was the time she fell off the couch and into the coffee table.  No skin was broken but the swelling on her forehead looked like a Unicorn's horn!  As luck would have it, that same day she had some sort of allergic reaction to a bug or a plant and her right I swelled shut!  I took her into the clinic because I thought her brain was swelling from the fall!  Thank God for Benadryl!  Back then we could give that to a kid under age 4.  Thinking about this now, it is shocking that we chose to have three more of these little creatures!

Speaking of age 4...that was the year of the big D diagnosis.  When I held that newborn tiny baby swaddled in my arms I never imagined that a short 4.5 years later I would be watching as the nurses swaddled her again and struggled to get in an IV.  I can still see the procedure room.  It was blue, with fish decorating the walls and ceiling.  Relaxing, right?  It was designed to keep a child's mind off the procedure about to happen.  A side effect is that I hate fish...and aquariums...and IV's.  That room is the turning point; the moment "pancreas" was added to our list of parental roles.

Life moved on and we made it through the typical experiences- friendship troubles, middle school, driver's license,  high school, hormonal fluctuations, Algebra II, sibling rivalry (close calls there!), and fender benders. We have survived- or I should say SHE has- moments when I could have strung her up by her toes.  For example, she gives me parenting tips, directions on how to drive to the eye doctor's office, and questions my every movement while blatantly ignoring my suggestion to follow up on her college application.  Really? However, I am able to overlook some of that when she helps me make good choices by picking me up from the Ground Round after I have had a beer or two. Better safe than sorry, right?  We  have made it through a few more hospitalizations, an allergic reaction to Vancomyocin, and blood sugars so low I can't believe she was talking! I don't think I can say we have a full fledged grown up yet, but I think she is on the right path. Last night, she text for permission to sleep at a friends.  I told her she didn't need my permission anymore, but I appreciated knowing where she was in case I ever needed to send the cops looking for her. (I stole that line from my friend, Traci!)

As I write this, she is 18 years and 1 day old.  Thirteen and a half years ago, this point seemed so far in the future and faced with a new world of insulin, blood sugars, needles and keytones, I could literally not imagine what this day would look like. Ten years ago, we thought our life had become so much easier because there was a new long acting insulin called Lantus and we could use insulin pens instead of drawing up a shot cocktail.  Six years ago we introduced the freedom of the insulin pump to our lives.   Two and half weeks ago, we were at Capitol Hill, speaking to members of Congress and today, she is writing her own letter in support of the SDP.  Her next milestone birthday is age 21.  Maybe she will be given a cure for that one! Until then, we have 3 more kids to grow and many more battles to fight.  But, we will take a minute to pat ourselves on the back for how far we have come!

If you haven't yet...

Thursday, July 11, 2013

Reflections on JDRFcc13

Sitting here, writing, while TJ is at baseball practice seems a somewhat surreal.  "Normal" life has resumed and we have been home less than 24 hours.  Yesterday at this time, we hadn't even boarded our airplane after our amazing experience on Capital Hill.  I am going to touch on the highlights but I don't think anything I say will do the experience justice.

The City:
It was an experience in itself watching the kids take in history.  TJ was in awe of the sheer size of the monuments. Tylie was amazed by everything around her.  She literally walked at snail's pace so as not to miss a single thing.  Taya just soaked up the atmosphere.  One of the most compelling things we did was to see the Changing of the Guard at Arlington.  Perhaps it was more meaningful because without the sacrifice of those who came before us, we would not have had the opportunity to come to Washington and plead our case.
The kids by the Reflecting Pool on the mall, wishing for a cure!

The Conference:
I am not sure it can be called a conference, exactly, but that is how I think of the first two days at the motel.  I have already highlighted day one in my previous post but from there, we really got busy!  The organizers of the event, Hasan Shah and his staff, Camille Nash and Angie Platt, as co-chairs and the numerous volunteers have to be commended.  Our family felt prepared upon arrival and any questions that came up were easily answered.  The Town Hall meeting was inspiring.  Afterward, Tylie said her new goal was to be a part of that panel someday.  TJ couldn't get over all the athletes- racecar driver, Charlie Kimball, Gary Hall, Jr., baseball announcer, Brian Kenny, and Ray Allen in the audience.  He has always thought nothing could stop him and their stories only proved his point!  More than once during the course of that meeting did I feel my eyes tear up.  On Monday, the kids had been interviewed and Tylie had responded to a question saying, "I have Diabetes like I have blue eyes and blonde hair.  It isn't who I am."  Both Troy and I felt ridiculously proud in town hall meeting when Mary Mouser stated virtually the same thing!  These T1 kids grow up fast and they grow up smart!  The Blitz meetings were a bit overwhelming for the kids.  Tylie vigorously took notes afraid she would forget to say something important.   Troy noticed that they were very similar to the role play situations they do as part of DECA competitions.  Tylie and Taya have both participated in these events and it helped them to be prepared for the meetings on the Hill the next day.  TJ, especially, appreciated the social hour as he had more time to mingle with his new friends.  He came home with a lanyard full of pins and stories to tell about each one.
TJ and Charlie Kimball
The Blitz:
The big day was on Wednesday.  We loaded the bus before 8 am and hit Capitol Hill.  We really had no idea what to expect at these meetings and each one was quite a bit different from the other.  All were positive.  Two of our meetings were delayed as Senators were both held up testifying at hearings.  We watched them on the monitors in their offices.  In addition to attending a hearing ourselves, the kids got a first hand look at the day to day workings of our elected officials.  They are very busy people!  It made us appreciate even more the time they were able to give us to tell our stories.  The hearing itself was a little emotional for me.  I don't know if I was overly tired or just overwhelmed by the sheer number of people there hearing the testimony, but several times I got very teary eyed.  Listening to Jean Smart talk about her doctor recommending abortion, Ray Allen so clearly describe the parenting perspective, listening to Jeffrey Brewer and Dr. Rogers speak about where we are in the research- we have come so far, but yet there is far to go.  Senator Heitkamp said it best when she stated in our meeting that much time has been spent on cancer and heart disease.  She said, "That isn't a bad thing but more needs to be done for Diabetes.  I believe we will have a cure."  She happened to be our last meeting and we couldn't have asked for a more positive finish to an incredible day.  An unexpected special moment occurred during the group photo when VP Biden gave TJ is small American Flag pin and Tylie got a hug.  He also told her he didn't think girls should marry until they are 30!  How cool is that?  We left Capitol Hill feeling invigorated and empowered.  Tylie even commented that maybe working in government would be an "ok job."  We couldn't be more proud of all three of them. They have grown beyond measure by this experience.
Ready to go meet some lawmakers!
The Work:
Oh, but there is still much to do!  I told Camille before I left that we wanted- needed- to do more to get the word out in North Dakota.  Troy stated how good the experience was for our family.  All three kids said they would do it again in a heartbeat.   They are lobbying to go to the Friends for Life conference next year to continue making connections and to keep spreading the word.  They are speaking to our local parent group in August about their experience and already talking about meeting with our senators and representative again soon.  I have no doubt they will lead Promise meetings with a flourish! I am working on a meeting with TJ's principal to talk about a JDRF School Walk this fall.  He can't wait for our annual talk with his class, as this year he will have so much to show them. He has already re-named his little stuffed pancreas that he uses as a prop, "Arty", short for artificial pancreas, of course!   Right now, I am so pumped up I want to quit my job and advocate 24/7, but sadly, we have a house payment...and medical bills!  But, we will make the time because we have felt the power of our voices.  Since we have been home today, I have already received a text message.  A friend of a friend has a newly diagnosed child and wondered if she could call me.  It seems I get those messages more frequently, lately at least once a month and sometimes twice, and I'd really like for them to stop.  I'd like to not pick my son up from baseball to find his blood sugar 425 because somehow his tubing literally got tied in a knot, starving his cells of insulin.  I'd like to not have that extra layer of mother/daughter animosity simply because I cannot stop myself from asking if blood sugar has been checked .  Of course, that is only the start of a list based on what happened in the 5 hour we have been home.  D does not give us a break.   When I tucked TJ in to bed tonight, after changing his site and restarting the flow of insulin, I thought how nice it would be to go to bed without fear.  As he held tight to his JDRF CC Build-A-Bear with VP Biden's American Flag pin proudly affixed to its tiny t-shirt, I again resolved to make the time to continue what we have started this week. Now that we have seen what we can do, advocating is no longer a choice- it is a responsibility!
JDRFCC13: Advocates and Friends- They ROCK- every last one of them!!!

Tuesday, July 9, 2013

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!

Monday, July 8, 2013

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!

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. 

Friday, July 5, 2013

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.   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!