Hope and Hopelessness at a BBS Conference in Our Old Stomping Grounds

Over the weekend Dave and I attended the Bardet-Biedl Syndrome conference in Washington DC (Lucy’s BBS). It just so happens that DC is our old stomping grounds. Yes, we lived just outside that city for our first six years of marriage. We had our first three babies there.

And I’ll tell you what: being able to reminisce all that good that happened there (we took a drive to all our old spots before checking in) was such a needed light to combat the often dark parts of a BBS conference.

These conferences come around every other year and I’m going to be honest: they are hard. Oh, there’s so much good! We get to meet other families with BBS kids, incredibly inspiring adults with BBS, the doctors who tirelessly work for cures and answers.

But there is something very heavy about coming to face to face with the reality of what BBS means to all of us.

Somehow those conferences are filled up with both hope and utter hopelessness all at the same time.

Reminiscing in our Old Stomping Grounds

Let’s start with some reminiscing. Because that part was quite delightful.

I got it all mapped out so we could make the rounds to the three different places we lived right outside the city.

Thirty years ago we graduated from college, packed up our big Penske truck, and drove across the country to D.C. I had a job waiting working at the Points of Light Foundation and Dave would be working on a new online company he and his dad were trying to start.

We rented this townhouse (below right) from Dave’s brother who had moved away and was having trouble selling it.

Oh my goodness, so many memories in that spot and I felt so alive thinking about that lifetime ago when we were just babies trying to figure out the world.

Then we moved to Oakton, Virginia and lived in this apartment.

Max was born when we lived there and we were in the city all the time.

Dave and I sat there this time around and wondered how in the world did we even know where to live?

But we picked the best spot that led us to the best of friends.

Then we moved to this condo behind us below across the parking lot:

Oh I know it looks just the same, but it was different. And we lived right across the breezeway from friends and those other same friends we’d get together with so much.

Dave and I sat there on a little bench behind those condos and I texted a bunch of those friends feeling so filled up with adoration for them. How we got to support each other through the thick of raising little kids.

I remembered so many gatherings with those babies. The Easter egg hunt on that little lawn.

That was where Shelley taught me how to make the best flatbread. Where we sat on that back porch (pictured above) with our dear friends from Hungary and talked long and deep about God and life. Where we would watch each other’s kids so we could run errands.

Oh it was grand.

Elle was born 14 months after Max when we lived here. And oh! if only those walls could replay some of that chaos and beauty for me!

Then we moved to McLean and rented the very same house where I lived when I was my kids’ age.

Here we are at the Lincoln Memorial with the Washington in the background when Saren and I were little and lived in that same home:

And here’s Max and Elle in a different spot with the same backdrop…with only slightly better hairdos…ha!

This house is where I fell in love with Joy School.

Where we gathered and connected and grew in so many different ways.

(That was at a presidential inauguration at the capitol all those years ago.)

…And that’s where we lived when baby Grace joined the family.

We would walk around at night to find fireflies and explore. Halloweens. Birthday parties. That time when that big tree fell on the side deck and ripped it off in a storm. We walked around reminiscing and talking to one of our dearest old friends about all the memories, picking up right where we left off.

Everything has changed so much, yet so much is the same!

The church we attended:

I didn’t realize going in how beautiful it is to have a chance to reminisce like that. Those memories sparking up like those fireflies we marveled at all those years ago.

Oh those were precious memories with these three babies of ours.

Thanks for coming down memory lane with me!

The Monuments in Washington DC

Of course we had to make a quick visit to our favorite places in the city.

I adore the feeling in this sacred memorial.

This one too:

And THIS:

Then and now.

Oh it was so good to be back!!

Little could we know back then that we’d be back many times. This time for a conference for our daughter with a genetic syndrome. Little did we know when we were having those babies back then that we had a one in four chance to have a baby with BBS. And that we would get her on our fifth, bringing with her a life filled with more depth than we could imagine.

A Sacred Evening on the Eve of the Conference

After our little whirlwind tour through memory lane we arrived at our hotel and helped with registration: so many people we know and love after gathering every other year for so long.

That night we had a little heart-to-heart to prepare for what lay ahead. Dave and I haven’t really dived into our feelings about these conferences, and that night, in a little sliver of sacredness, we prepped our hearts together, “seeing” each other and what we are each carrying. And aching for Lucy.

We’ve come a long way since the beginning.

At first my mom was the one who came with me to the BBS family conferences. She came until Dave was ready. To our first one at Duke University. And she went with me to the BBS family conference in England too (oh how I love her for that!) And once Dave started coming, it wasn’t butterflies and rainbows. We just kind of pulled up our bootstraps and got to work learning and helping. I served on the BBS family association board for the first few years and Dave has been on it ever since that. There is continual research and growth. So many researchers putting in the hard work to make things happen and they really are the equivalent of rockstars to us.

But that doesn’t mean we don’t still ache and keep lugging around worries that we sometimes feel may break us.

I keep thinking I’m going to outgrow the hard. Lucy is in college after all. She is doing impossible things every single day. She inspires me and makes me more proud than I can ever express.

But all that glory cannot take away her sorrow that she can’t, despite her very best efforts, wrap her heart around. Her questions as to why it has to be her. And all the good stuff (because there really is so much good!) can’t come in and wrap a tidy little bow around the mess of what this all is.

But once again we got to work looking for the hope.

The 2026 Bardet-Biedl Syndrome Conference in Washington DC

This is Tim leading the “Heroes” award ceremony to lead out. He was one who called me right after I posted here on the blog about Lucy’s diagnosis.

In our world that was suddenly filled up with worry and the unknown, it was like salve to my soul when he said, “I know a lot about BBS.” He has a son a year older than Lucy with BBS, and has helped us every step of the way. He’s also a tremendous leader and connector. So very grateful for his friendship through all these years!

We watched slide after slide presentation:

This is Tara, another friend we met way back in 2012 and have been in touch with ever since. She and her husband are incredible researchers and are doing some pretty outstanding things in the BBS community. Their daughter is one year younger than Lucy, and although Dave and I have gone to Canada to visit them, our girls haven’t met yet. Love that we got to hang out at the conference.

A Huge Range of How BBS Affects Individuals

There is such a wide range of people affected with BBS, and so many different genes associated with it. Some are completely blind and deal with obesity, kidney failure, heart and liver problems. Some are non-verbal. And others are relatively unaffected. They may have poor eyesight and even extra digits, but function pretty normally in society. Some are diagnosed before birth and I’m guessing others may never find out they even have it.

This girl was phenomenal. She just found out she has BBS a couple years ago and was already working on her PhD.

That’s what led her to figure out she has BBS.

Over the two days of the conference we had several breakout sessions including:

• Opthalmology
• Obesity
• BBS Adults
• Nephrology
• Endocrinology
• School-based O&M/TVI
• Neuropsych
• Caring for DD Dependents
• BBS Science
• Mental Health
• IEP Guidance
• Parents of Dependent Adults
• Independent Living Adults

By that night I was pretty delighted when the question popped into my brain about whether D.C. had gained a Levain Bakery by the year 2026, and found out it had.

It was a perfect debriefing opportunity for me and Dave to walk to Georgetown and get a little deliciousness.

A Morning Run in D.C.

The next morning we got up early to go on a little run to the White House with our friend Tara.

Unfortunately that White House of ours was pretty covered up with these fences all around.

We did at least catch a peek though.

Conference Last Day

There were more panels and break-outs on that last day, as well as more good people to get to know.
These girls were SO AWESOME, each with a Masters Degree.

Raising BBS Kids

Dave and I split up and helped lead breakout groups about being a BBS mom and a BBS dad. Dave looked up some good questions on AI and so I did too.

And I wish I had a picture of that group of moms in that room. All of us a bit teary as we tried to find the balance between consoling each other on the heartbreaking things and looking at the bright side. Determined to cling to the silver linings.

Some Hope to Close Out the Conference

And then the final speaker was one of our favorite doctors from Iowa:

We have visited her for doctor appointments in Iowa with Lucy quite a few times.

She was sharing some really, really hopeful information.

We already knew this, but it was pretty amazing to be there in person as Dr. Drack shared some recent findings filled up with hope for vision research.

And it was the best way to end that conference.

The hope triumphing over the hopelessness yet again.

How grateful we are for so many who put in so many countless hours to orchestrate conferences like this. For those “rockstar” doctors who give their careers to studying genes and cilia and how they affect human bodies.

And for the resilience and strength of so many individuals with BBS who show up and exemplify doing the impossible over and over. Who buoyed us up in so many ways.

So many heroes and memories mixed together in Washington D.C. this time around.

More from Our Journey

If you want to read more about our life with Lucy and Bardet-Biedl Syndrome, you can find the whole story on our raising a child with special needs here. And if you want to hear how God is looking out for Lucy, here’s a favorite: Miracles Amidst the Hard Stuff: Lucy at BYU Summer School.

Also, some other BBS Family Conferences:

• My first BBS conference with my mom as my companion
• Dave’s first conference
• Lucy’s first conference