Monday, April 11, 2016

the Bubble Run and new BBS friends for Lucy

Two different stories merge into one right here.  At first they may not seem BBS-friend related but just wait for it :)

First:

Last year we had a pretty spectacular fund raiser at the elementary school.  It was a "run" where kids got "sponsors" who would pay them for as many laps as they ran.  It was really well-run and very successful.  But the company who ran the run took such a large percentage of the proceeds so this year the PTO decided to do their own fund raiser.  They called it the "Bubble Run" and boy oh boy were those kids ever excited about that thing!!

I was so impressed with the PTO and how they organized it all.  I got to go volunteer a couple times to help with the levels of awards and all that jazz and yowzas, a lot of work went into that thing.  So many great parents willing to help makes me so happy.  So grateful for the community we live in.

The day finally arrived and the excitement was electric.  Let's check out this super blurry pic. of Claire and her friends jumping for joy:

And here's little runner Lu:



ooop, here's another great blurry pic:
But look how excited that girl is?  Had to include it.

...and all her excited friends:
(I think it was super hero day too...)

Ok, blah blah blah, let's take a break from that one and head to the second story.

It's about the Marshfield Clinic.  

Remember I wrote about how awesome that organization is back HERE (and more details HERE)?  They are the ones who started the "clinical registry" we have been raising money for (more about that HERE).

Anyway, they held a special "100 years celebration" here in the desert for all the doctors and donors who have helped over the years and Dave and I were honored to be invited.  Boy the Marshfield Clinic does so many fabulous things for so many people!  BBS is just a tiny fraction of how they help.  When we visited the "Center for Excellence" with Lucy we met this great lady, Teri, below:
She is a huge part of what Marshfield is trying to do for BBS families and it was so great to get to go to lunch with her as well as attend this beautiful celebration with her and her husband...
...along with our parents-of-BBS-kids friends on the right below and Dr. Murali in the yellow (and her awesome husband).
Dr. Murali was one of my favorite doctors we met at the Clinic way back in 2013:
She was extremely helpful and bright.  It was fun to meet her husband and catch up with her at the dinner.  They have a 12-year-old child who scored a 36 on the ACT test.  I'm just saying.  Wow.

At the dinner my friend Mary and I were talking about a new family who has children diagnosed with BBS right in the same area.  We planned to get together as soon as possible to meet this new mom we had been told about who was trying to grapple with this new diagnosis.

Ok, so let's get back to the Bubble Run.

Elle had an all-day tennis tournament at the same time but Lucy really wanted me to come watch her run (as did Claire) and of course I wanted to be at both so I was kind of rushing.  But I got there in time to catch the excitement of it all.

A few minutes after I arrived a lady I had never met came and introduced herself.  My brain was scrambling to figure out where I had heard that name as I stood there in that swirl of excitement and activity.

And then I realized who it was:  This was the lady Mary and I had heard about who recently had two children diagnosed with BBS.

Right there at our elementary school.

Her kids didn't even go there but she happened to be there helping with the Bubble Run right at the same time I swooped in from the tennis tournament.  We just stood there in amazement that we happened to meet up right then and there.

We talked for a while...she has one child diagnosed with BBS and another waiting for test results.  That's a scary time.  I remember it so well (see my post when Lucy got diagnosed HERE).  The world is dark for a while when you find out something that will change life so much. And there are a lot of roller coater emotions that never stop after that.  We exchanged information and planned to get together soon.

That weekend another BBS mother friend texted that she was in town from Utah and wondered if we could get together.  The stars aligned just right so that both these great families could come over for a morning visit at the same time.
I loved it. Love that it was when my mom was here too...see her up there on the right?

Claire was pretty excited to get together with this cute non-BBS-affected sister who she met last year in Utah (back HERE).

I was pretty excited to get together with these wonderful ladies:
It's crazy how immediately bonded you tend to feel to people who share BBS.  I'm sure it's very much the same with any syndrome.  You just "get" each other.

But most of all, I think Lucy was the most excited to have some BBS friends to hang with for a morning:
Lauren, the little girl next to her, and her older brother, are the only other BBS children she has ever met (last summer) so she was so excited to see her again and to meet little Rachel too.

So, there are my two drawn-out stories to lead to this wonderful one of love and companionship that we are so very grateful for in the BBS world.  

3 comments:

  1. Love this story. I didn't get all the details when I was there. I am so lucky to have met these terrific families who are dealing with their BBS kids with flying colors!

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  2. Such a great story. Love how things all just work out.

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  3. I want to know how they did the balloon arch! I was in charge of our school run this year and really wanted a balloon arch. I'd love any suggestions. Thanks!

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