Dear people who were at Dulles Airport yesterday evening,

That crazy lady running through the airport in sheer panic because she thought for sure she would miss her flight after standing helplessly in the most horrendous security line in the history of the planet may or may not have been me. Yes, the one with the girl who looked like Lucy who decided she needed to sit down in the middle of the floor and have a little pout in the midst of the mad scramble while her mother frantically begged her to please cooperate as she tried to balance a myriad of carry-ons because the darn baggage check line was too crazy too. Didn’t that mother know that the simple frenzied-begging-with-tears-in-your-eyes never works with that little girl of hers?

You’ll be pleased to know that that particular mother (who admittedly had a striking resemblance to me) did make that flight she was scrambling to get to by the skin of her teeth (she had to get home to her other children), and that she proceeded to make up some pretty darn good games on the plane to keep that crazy daughter of hers occupied for five hours.

Just wanted to clarify that. And that that mother felt really bad she was too frantic to profusely thank the very kind people who offered to help her get to that plane.

Love, Shawni (fellow traveler who saw the whole thing)

And as a side-note, isn’t it interesting how when your plane has a ton of turbulence you can’t stop being thankful when you finally land, but that when your flight is smooth-sailing you forget how amazing it is that an airplane carrying hundreds of people can actually get you from point “a” to point “b” safely? You forget to cherish the fact that you are alive and that the events of the following week will, indeed still be able to take place because you still exist? Our flight had the worst turbulence I have ever, ever felt. We were on a complete roller coaster jumping and diving through the sky because of the storm we were trying to land in here in the desert. Everyone was silent…you could have heard a pin drop (I even heard someone sobbing) except for Lucy who was happily telling me stories and then proceeded to yell that she wanted orange juice right now. Everyone clapped and clapped when we landed.

So here we are, back home, ready for a day snuggling together while watching conference. And I’m so, so thankful for that.

Following are the pictures I eeked out of my little camera from our trip (I was definitely not in photography mode):

Lucy pretty much ate it up that she had her parents all to herself for almost a whole week.
(That’s the main hospital behind us where we spent most of our time.)

Dave played “memory” with her approximately 39 times.

She won every time.

Some appointments were good:
(above is one of the sound proof rooms where Lucy did all kinds of hearing tests.)

…and some, not so good:
This is how Dave and I felt from trying to cajole her to be somewhat cooperative over and over and over again.

Lucy loves me. But man alive she LOVES her Dad. She worships the ground he walks on. So being there with some serious undivided attention from him was right up her alley.
That place they are walking to is called “The “Children’s Inn” and we were so thankful that we got to stay there.

There were art rooms, computer game rooms, teen rooms, etc. but Lucy’s favorites were the tree house playroom (above) and this little puzzle cove (below).There was a big park out back surrounded by the most gorgeous trees:
Seriously, check out that green.

Lucy did that puzzle about 64 times. Oh man she is now an expert at that thing.
Above is the anesthesiologist ready to put the mask on Lucy to help her go to sleep. He was SO great, especially considering Lucy had a little cough and Dave and I were up a good chunk of the night before wondering whether we should even go through with this.
The nurses were SO nice to Lucy, especially since it was her birthday. They ordered a cake for her and gave her some nice presents. Even though she was totally loopy and grumpy and throwing herself around, that cake sure made her perk right up.
They even ordered ice cream which she ate like she was drunk. Wow, it took her a long time to come out of that, even when she got to have all those things she doesn’t normally get to have (she doesn’t eat sugar at home at all).

These two women were amazing. They were the ones “hosting” us and they were so great with Lucy, but most especially with us. The one on the right is the one I had had a bunch of contact with on the phone before we went and it was so great to finally meet her. Did I mention how great it was to have doctors who really know what BBS is?j

Each night we were there we got to visit some of our best friends we had when we lived there way back when.

These guys are our wonderful friends from Hungary we have so many great memories with:
Their kids have grown like weeds. Their oldest daughter is quite an amazing artist who, among all the things she’s done is working on a drawing of our kids.
Isn’t she talented?

Lucy latched onto one of their daughters like a bee to honey. The poor girl sure put up with Lucy so nicely.

We went to my very favorite restaurant (Sweetwater Tavern) with our other dear friends:
(She has started a great website here you should check out…so many great tips about saving money every way you can think of.)

One night we went out to dinner with my brother and his wife who live in D.C. They came back to hang out with us at NIH later that night:
And last but not least we got to meet up with our friends who moved to VA from right here in our neighborhood almost two years ago. They have left a gaping hole here and I just found out that every time Claire gets a wish (birthday candles, eyelash, etc.), she wishes that these guys would move back.

All in all, it was quite an amazing trip. Very tiring and exhausting with some really good stuff and some bad mixed in too. The bottom line is that Lucy is really doing so well…her kidneys and heart are functioning great, she is learning and progressing mentally very well (I still thank my lucky stars every day for her preschool). But I must admit it was heartbreaking at the end. The big sedated eye test (ERG) showed a little more deterioration in the retinas than we had thought it would. And that’s always hard to hear. The doctor was quite amazing and told us not to loose hope…there’s so much research going on in the eyesight category right now and you never know what the future will bring. But right now the prognosis isn’t great. And that’s hard to hear.

We are so incredibly thankful for NIH.

Similar Posts


  1. Where do you get all your cute tops and sweaters? You look fasionable but not like you are trying to be a teenager! What a great resource to have for Lucy. I am glad your trip went so well!

  2. I'm not sure whether to say, I'm glad everything went well (especially considering the down sides) or I'm glad it's over. Either way, both apply. I love how Lucy is so into the Dora, and cartoon characters. I so miss playing barbie dolls with my little girl. She never really liked barbie dolls.
    Okay, this is totally random and odd, but how tall are you, you look really tall, but even more amazing is that your husband is taller than you, how tall is he?

  3. I just wanted you to know that I pray for you and for Lucy. Your family is amazing. Regardless of how Lucy's problems may progress in the coming years, I am confident that she is in a family that will make the best of it. You are making sure she can make the most of her time on earth. That is super.

  4. The ERG results are always hard – but Ashley at 3 showed almost no response at all from the rods and cones and at 17 and 3/4 she is still reading normal text, playing her video games, watches TV. She has a small field left – but a GOOD field.

    SO – there is always hope!

    I love Julie too – she is the best!1

  5. oh I'm sad to hear about lucy's eyes, that must be hard news to hear but it's great to hear the week was a positive experience. Love all the pics


  6. I'm glad you were able to get everything done in one place, but I feel really bad about Lucy's retinas. It is never easy to discover that what you have hoped and prayed for isn't showing up in the test results. All I can say is that over the last few years, I've learned that miracles come in many forms, most often in ways that are more beautiful than anything we could have planned ourselves. In my own life, I've found that the miracle of healing doesn't always manifest itself in medical perfection, but in bringing us strength to handle new challenges and to move forward in faith.

    I'm having a hard time putting into words what I want to say, I guess, just know you are in my prayers. And I think you are awesome parents for making the past week a special one for Lucy, despite the un-fun moments.

  7. What a whirlwind trip you had! I am sorry to hear the bad news and I am happy about the good news! You are amazing and an inspiration to us all. Happy Conference Sunday! 🙂

  8. You are truly inspiring and even that adorable little Lucy of yours is inspiring! I am so sorry to hear about her eyes, I know that is a huge concern. I know that the Lord has an amazing plan in store for Lucy and you all. It's so hard to understand His will, but miracles do happen and I, for one, will continue to pray for Miss Lucy and your entire family. What a blessed little girl to have been born into your home!

  9. Jealous you got to see Jeff and Annie! Newel and I were with Chris and Sam this weekend in CA as they await the arrival of their new little one on Tuesday. So exciting! We're trying to work up a vacation all together for next summer — we'll talk to you guys soon about it. It would be so fun.

  10. SO GLAD TO SEE THIS! How in the world did you have time to do all this blogging since you got home. You must be slammed with a million thing. But we love it!

    Glad you're still alive after that horrendous plane ride. That's right down scary!

  11. I'm so happy there's some good news, but so sorry it wasn't all good. My heart dropped a little for you. You are moving heaven & earth to help that little girl, and she (and others) will be so blessed because of it. Keep the faith!

Leave a Reply

Your email address will not be published. Required fields are marked *