Thursday, August 20, 2015

some BBS friends, EFY pick-up and the long road home

Over the years since Lucy got her BBS diagnosis Dave and I have had opportunities to go to a few BBS conferences where we have met so many people we have fallen in love with.

That is so easy when you can relate so much with the BBS commonality.

There is something so comforting about talking to someone who really gets it because they're in the middle of it just like you are.  It makes it so much easier to try to figure out a whole new language filled with medical jargon and to try to sort out the ins and outs of rods and cones and gene therapy and the elusive "obesity gene" when you have someone sitting next to you who is just as eager to learn.

We have met a whole lot of wonderful BBS parents over the years, but only a handful of BBS affected kids, and Lucy has never met someone with her same syndrome.

My friend Amy, who has two kids with BBS had texted me earlier since she was going to be at Bear Lake at the same time as we were.  We weren't able to meet up there but it worked out that we got to meet for lunch as we were passing through town on our way home.  She has one 14-year-old boy and one 7-year-old girl with BBS, as well as another boy and girl who are unaffected.

When I told Lucy we were going to meet up with another BBS family on the way back to the desert her eyes sparkled.

She was SO excited.

It was amazing to get these three BBS kids together...their similarities were quite startling.
Even the similarities of the two non-BBS kids were pretty crazy!  Amy's other older boy wasn't able to make it but check out Claire and Amy's other daughter up there on the left.  She is such a huge helper of her little BBS sister just like Claire is to Lucy and they even look so similar to me.   

We had lunch and then walked to a nearby Toys R Us so the kids could stay busy while Amy and I talked a little longer.  So crazy how these girls talk so similarly, both love art, both love princesses and the same legos.  It was so fun to talk to her older boy as well, who is as sweet as they come, and even drew me a picture at lunch :)

I look like I just went through a washing machine below so let's go ahead and ignore the left portion of the picture, but meet Amy on the right:)  
Loved being able to catch up with that great woman and feel the spirit of her love and care for those sweet kids of hers.  So good to talk through how to find clothing and shoes and dealing with appetites and eyesight.  Her kids so far have held onto their vision pretty well which is so great.  It's always so great to see things like that to give you hope, although that hope was shattered a little bit this week as we had some kind of scary/sad instances with Lucy's vision.  Who knows what will happen with her.  Every child with BBS is affected so differently so it seems like there's never enough time to talk it all through.

But so grateful for that time with Amy and her sweeties.

It was the 24th of July in Utah and man alive do they ever know how to celebrate that statehood of theirs.  We couldn't help but go to one more whiz-bang rodeo in downtown Salt Lake City to celebrate with the stragglers of my family who were still around:
Loved sharing it with these two littles who I got to hang out with all week:
Happened to be there at the same time as my dear high school friend Marie and her family with six kids.
Wish I had a pic. of the rest of the family...so crazy how all these kids are growing up so dang fast.  We were just barely their ages I swear!

We walked by our beloved temple on our way out...
...to meet up with Dave's sister Carol Lynn to have a little sleepover at her house.

As we drove down I-15 from Salt Lake to Provo I swear I have never seen so many fireworks in my whole life!  There were firework shows going on left and right for as far as your eye could see.  We pulled into Carol Lynns just in time to drag her out to the corner with us to watch the finale of one close-by show.
It was the most perfect equilibrium evening to stand out and just bask in all the firework and Aunt CL glory.

We stayed up and played a few games and then Claire and I left Lu and CL sleeping bright and early the next morning to go retrieve Grace from EFY.

She had had the most amazing week.  It was so fun for me to get so many updates from her throughout the week.  All about the speakers and how wonderful they were, the friends, the counselors...all the poundings of her heart as she felt the power of the messages she heard.

I was so grateful every snippet of recap she sent along to me.  Oh man I love that girl!
So fun to see these two reunite too:
But rough to pull her away from this:
Her roommate we adore:
With their counselors:
...and other friends we love so much.
Loved hearing more details during all our driving hours following that.

That EFY is a pretty cool program.

Drove past this new temple on the way back to Carol Lynn's:
We couldn't "touch" it like we like to because it's still all fenced out under construction but I love how unique it is!

Carol Lynn gave the girls some books she has loved as a school teacher:
Lu was pretty excited to be able to read those things all the way home.
...and got to go out to a little breakfast together before we took off.
Love that dear, sweet Carol Lynn.  She is so wise and thoughtful and good and takes such great care of us every time we get to hang with her.

Then it was just me and my three girls off on the open road.

I LOVE being able to stop and bask in all the beauty we want to en route to where we're going.
That night we got as far as St. George because we were going to our second annual Tuacahn performance that night.  I'm saving that post for tomorrow...too good to smoosh into this one.

The next morning we wanted to head to church before we took off and the only time frame that would work for us was a little branch they hold each Sunday in the retirement home there.  We LOVED it.  All those wonderful seasoned people singing their hearts out with their large-print hymn books and the big smiles they gave our little straggly bunch to welcome us.  One lady had to squeeze out behind us with her walker during a pretty quiet time and when we scooted forward to let her through she yelled "thank you!!" in the sweetest and loudest voice (must have been a little hard of hearing).  The talks were awesome and the spirit was so strong in that little room.

The St. George temple was close by so we had to go touch that thing.
The last time we had stopped there was back HERE.

Let's check out how excited Lucy was to be there this time around:
Oh shucks, you can't see her face too well, she wasn't too overjoyed to be there but luckily she survived :)

Let's go ahead and note that I was wearing the same thing I did the day before...since I left my suitcase sitting on the porch at Bear Lake.

Yep.  I really did.

Missing that stuff that I'll pick up next week when we take Max up to Utah.

We couldn't pass up the chance to visit our friends who just moved from Ohio back to the West on the way home.  Love this great family and that they live closer these days!
Then we drove and drove.
And drove some more.

And finally, we were HOME.
Sometimes, as much as you may love a great adventure or two, home and your own bed feels like a little piece of Heaven.

8 comments:

  1. Fun! Is that Cracker Barrel for Breakfast?? I LOVE THAT PLACE!! Lots of road trippin' I wish I'd run into you downtown SL one of these days!

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  2. It's lovely that Lucy found a friend with BBS.

    I totally agree, the children really do look alike.

    Hope it's OK to ask but what was the sad/scary thing that happened regarding Lucy's sight? I'll understand if you don't want to share it tho. x

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  3. The Big Orange Splot is a great book.

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  4. LOVE that Amy! She is a good friend of mine as well. So happy that your kids got to meet for the first time. That must have been so wonderful for both of them!

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  5. I am anxious to hear about your new scripture reading program as a family. I can't wait for that post!

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  6. How fun to see the details of what happened after you left us! Every picture is a treasure!

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  7. Thanks for posting the pics of Carol Lynn. She was always a favorite friend in high school.

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