Thursday, July 12, 2018

the 2018 BBS conference

We kind of switched around summer a little bit this year because of the BBS conference. This conference happens every other year, and happened to be taking place in Utah this time around.  Usually it's on the East coast somewhere, and usually we don't feel there would be a benefit to take Lucy.  

But this year was different.  Lucy was ready to join us.  She was ready to meet some other BBS kids and we hoped, feel a little more identity with that world.  And it was different because the fact it was in Utah made getting there a whole lot easier.  We figured since it was close we should bring our other kids as well, which in the end turned out to be just Claire, but hey, at least we got her.  I have three siblings in Utah now as well as my parents and we were so grateful they could join us for the family picnic (my parents were there the whole time).

We were a little nervous about the BBS conference this year.  The one a couple years ago had left us pretty deflated (back HERE).  It's emotionally heavy to go to those things, filled with so much great information that is hard to grasp, yet greedily hanging on with all you've got onto any sliver of hope.  For years we had been hearing we were "right on the cusp" of cures for blindness and obesity.  But that last year, sitting surrounded by people who were hoping along with us for more hope to cling to from all the presenting researchers, hearing them tell stories of their children, struggling with things we hadn't even thought of, we realized the reality that the research isn't fast enough.  The health issues will continue to deepen.  And Lucy will lose her vision.  All the research wasn't fast enough.  That "cusp" of enlightenment just kept slipping further and further into the distance.

But as we let that hope fade away, we realized the next thing to hope for is vision restoration.  I believe it will happen.  There are so many experts and researchers working their tails off to figure things out.  And they aren't just working on vision, they're working on the whole gamut of issues BBS kids deal with.  And we now have the clinical registry (thanks to Dr. Haws and his team), and we have a way to help fund that thing (back HERE...along with help from so many blog readers over the years who have donated), and that just feels good.  

This year my friend hosted a little get-together the night before the conference to get some of the kids together.
Lucy had been really looking forward to that night.  She doesn't articulate it, but I think she is feeling more and more behind her peers at home. I think in her heart she was looking for something to hold on to just like we are.  So it was so great to see her mixed in with those kids (and their dog who was instantly Lucy's best friend) with that big smile on her face.

She was pretty proud to join in that throng of people, all welding canes just like hers.
And we were pretty happy for her.

She went to the child care with a bunch of other BBS kids for two days while Dave and I (and my parents) sat in lots of presentations.
 Learning stuff like this:

 
...from good people like these guys:
 ...and these guys:
(those guys above are working on a clinical trial that helps combat obesity we are holding on to hope that Lucy will be able to participate in phase three coming up)

I've said it before, but these people are my kinds of "rock stars" (back HERE).

So incredibly grateful for them and all the information they flooded us with those two days.  Dr. Haws is pretty incredible:

Lucy has been struggling more and more with autism spectrum issues (as I think the majority of BBS kids do) so it was interesting to go to this breakout:

There were lectures mixed in that I still, after so many years, cannot seem to grasp...so far over my head.
But man, I sure am grateful for all that mumbo-jumbo they know so much about and are pushing to use to help!

And even more grateful for this crowd who showed up to head to the "BBS family banquet" with us...which was really a picnic at a gorgeous park nearby.

This is how Claire felt about not being able to play soccer with everyone on the sidelines because of her recent surgery:
 Dang.

And this is how Lucy felt about having a couple cousins come join in the throng of BBS families:

 Tim (the president of the BBS family association) gave out awards to a bunch of BBS kids:
And we did our best at a group "family" shot:
(It was the biggest gathering ever.)

Love these fellow BBS mothers:
 And these good girls:



As we talked and our shadows stretched out further in the glowing evening sun all seemed right in the world.

Until Lucy had a pretty big meltdown.

She's been having those more and more lately and we are in the throws of trying to figure out the best way to parent that.  There have been some dark days lately.  I am trying so hard to put myself in her shoes...her world getting darker and darker, friends progressing in ways she cannot, all mixed in with hormones that are seemingly on steroids in these pre-teen years and it's a perfect recipe for some tough times.  I am at such a loss as to how to nurture her in the right way but the best thing, at least for that night, was to let her just have some alone time in the trees by herself. 

When she emerged she was all smiles again.  Thankful for these cousins to help bring those smiles out.


More sessions the next day:
Doing what Lucy loves best during lunch break:
We still have so much to digest, and once again, we have some "breaking heart" smiles (back HERE)
Maybe this one is more accurate:
But despite the fact that it's tough to put your heart through that kind of heavy stuff, there's something pretty wonderful about knowing there's progress.  No matter how small.  And that you can do something to help (still the best thing in our minds as of now is raising money to help with the registry...so grateful for the turkey trot and other donations over the years). 

There is nothing like knowing you have a whole army of friends right along with you.  All those people in their red BBS t-shirts are so beautiful to me.  And all the extended family and friends who love Lucy.  Her awesome teachers.  Her angel friends.  And blog readers too who have lended so much love over the years (thank you xoxo).

I'm so grateful for our "village." 

And for all the backbreaking work that went into making yet another BBS family conference possible. 

10 comments:

  1. I love the way you advocate for this amazing kid of yours and for many other kids like her.

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  2. Nice post Shawni. I can only imagine how overwhelming it must be to get so much information and then trying to figure out options and how to apply it to your own situation. What causes the obesity. I've always admired the pains you take to outfit in such cute clothes.
    As far as the meltdowns and navigating the teen years. I think most of your family is energized by activity and lots of people. Most teens benefit from down time to process all the changes that they and their bodies are going through (I know you know this). Raising 2 introvert daughters I remember how they liked to escape to the trees or the upper level of their play sets to ponder their lives. Would make sense that Lucy has lots of think about.

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  3. Meltdowns are communications. They are different from tantrums. Something is too much for her and words aren’t working.

    I would think there are activities for kids with special needs in the Phoenix metropolitan area. They might not have exactly BBS. It doesn’t just have to be once a year. She can be around other kids going at a different pace more often. I am surprised there isn’t a special needs camp for young women through your church.

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  4. How wonderful that so many of your family members made it a point to show up and support you and Lucy!! Having all
    Those loving people around will certainly help as she navigates life with BBS.

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  5. Meltdowns are regularly a part of our life as well. I tend to link them with being overwhelmed, and it usually stems from an unexpected change for being off of schedule... or being tired, or wearing the wrong socks or... yeah.
    But the book Sensational Kids has really helped me understand sensory processing disorder (SPD) that is so common among those with Autism

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  6. I have an autistic son. I can really relate to this post....from one warrior mama to another- thank you.

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  7. Just want to say that I love how fiercely you advocate for Lucy and do your darndest to figure out everything you can about BBS. All five of your children are so lucky to have you and Dave as parents!!!! (And man oh man can I resonate with the hormones and mood swings—my 11-yr-old daughter is driving me more bonkers these days than the other five of my kids put together!)

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  8. maybe a camp for kinds with similar (since BBS is so rare) special needs? My cousin has type 1 diabetes and went to camp for kids with Type 1 every summer. As an adult she still talks about those weeks as among the happiest of her childhood because she just felt so normal and understood. She volunteers at that same camp every summer (even though she lives in a different state now!) because it just meant so much to her.

    I love so much how involved the WHOLE family is in her care. What a blessing.

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  9. All children who struggle with autism should be this loved and guided as you are doing. Can't begin to fathom the depths...and the peaks of joy... this journey is for all of you. We have a dear nephew who is on the autism spectrum. He is grown and is living a productive and fulfilling life. His sense of humor and wit continues to amaze us. He is so valued and loved in our family. Not sure if you have seen it but the movie "Temple Grandin" is a wonderful journey of an amazing woman who was born during a time when autism was just not understood at all. Love that movie because it truly shows us what their world is like. How they see the world and people. It also shows a "squeeze box" she designed that helped her self calm during "Melt down moments". An amazing invention that many on the autism spectrum have used and found a great deal of help with. Maybe this is something that might help your Lucy? Thank you for sharing your journey. We all learn so much by sharing our paths with one another.

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  10. Sending love. <3 I was watching one of my new favorite YouTubers and thought you and your fam might enjoy her too! Her name is Molly Burke and she is blind and films so many amazing videos about her life as a young adult living on her own. She's so fun and warm and has great tips since she went blind at 14 but struggled with sight since birth. Hoping she'll send you all a ray of hope and sunshine.

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