Monthly Archives: March 2013

Tuesday at the Village

We had Easter dinner at our house tonight. Besides my mom and my siblings (less the Canadian contingent, of course), my mom’s sisters came. They asked about pictures of our trip, and I was reminded that I haven’t shared a lot of the snapshots we took. I’ll keep at it.

Just for fun, I took a picture of all Levi’s meds when I was packing. The picture below contains a few bottles of mine and Paul’s, but almost everything there is for Levi.


This picture does NOT include his Vest, which comes with its own rolling case that just qualifies for carry-on status. it also does not include the dietary supplements – I packed a small/medium rolling suitcase about 2/3 full of his special milkshakes and juice on the way down. Traveling with CF is definitely an undertaking.

Monday was spent in traveling, settling in, and hanging around the Village. On Tuesday, we headed for the Magic Kingdom (you may remember the stern lecture I had to deliver on the way in). We stopped on Main Street USA for the obligatory castle picture.


Shortly after this was taken, a parade came down the street. We had no idea what we were doing – it was beginner’s luck. We got to see Mr. Incredible and Goofy, among others. The boys decided there might be something to this Disney thing after all – up to that point, it’d been parking, people movers, and lines for strollers.

Their favorite thing at that park may have been the flying carpet ride. They’d just recently seen Aladdin for the first time, and Levi was asking about riding a flying carpet even before he knew about an upcoming trip.


Back at the Village and after a restorative nap, we headed for dinner and then straight out into Mayor Clayton’s surprise birthday party. (Held every Tuesday night. He’s a terribly forgetful rabbit.) Because it was Fat Tuesday, it was also a massive Mardi Gras party with street performers and a slew of Universal characters.



Recall that all the ice cream you can eat 24/7 is a major perk of Village life. Elias took advantage of this at every opportunity.


The meeting with Curious George and the Man in the Yellow Hat was one of the nicest surprises we had, especially for Elias.


And because the Tuesday in question was also MY birthday …


I couldn’t resist a quick photo op with the mayor.

Receiving Generosity

So I said some time ago that I was going to tell you about some friends of mine when I could do them justice. I’m going to try.

I grew up in a church where the only instruments are the voices of the people, and boy, they can sing. I cut my teeth on a cappella hymns, and my daddy was a song leader. He liked to sing gospel quartet music with his friends, too, and I learned to sing harmony when I was pretty young. Music runs in the family – my oldest brother is a professional tenor and choir director (among other things). My name even means “song.” It seems fitting that I should love to sing. And I do.

But while singing along to the radio is right and good, it’s not the same thing as making music with a bunch of other people. So I went in search of some kindred spirits. I found the City of Flags.


They’re a part of Sweet Adelines International, and they perform barbershop-style a cappella music. I settled in to the baritone section and was happy to be singing harmony again.

What I didn’t realize was how deeply entwined my life would become with many of the women I met. I became fast friends with Kim, who still takes amazing pictures of my boys. I found out the Miriam is the mother of another friend I go to church with. Jody, who seems reserved at first, turned out to have undiscovered depths of humor and a penchant for wandering into retreat hotel rooms at 1:30 in the morning and leaving all the occupants in stitches. Meredith strong-armed her daughters into coming to chorus, and they became my chorus trip roommates, along with several others. It would take forever to mention everyone by name.

Serendipity had a little fun, and our floating slumber party had almost the exact ingredients for a double quartet – two voices on every part. We were missing a bass, but Meredith pulled in her friend Jan and we were good to go. Our rehearsals were fantastic fun but not always very productive – we made some great music together when we shut up long enough to sing.

It’s a lovely scene I’m setting, but the backdrop of my life during this time wasn’t so pretty. Paul and I took a big emotional hit, and then I had a series of medical incidents that resolved just fine but were really just an awful pain in the neck. (Pun totally intended. Please remember to tip your bartenders and waitresses.)

Music was a welcome distraction from all of this, and the women I was singing with were wonderful. They cried with me, prayed for us, visited me in the hospital, and made me laugh. When things turned for us and we adopted a sweet baby boy, they couldn’t have been happier. When we found out a few weeks later that he had cystic fibrosis, they cried with us again, and then they listened to my fanatical rules about handwashing and Purell and did just what I asked them to do. (We had to be a little crazy that first winter, especially about RSV. RSV is bad even without CF. He didn’t get it – yay!)

Two years later, when I surprised them (almost) all by walking into the middle of a rehearsal with another baby in my arms, they cried again. My babies went with me to chorus when they were little and laid across my chest in the sling as we sang – when they hadn’t been snatched away by a gaggle of self-appointed aunties.

With two boys, though, it got harder and harder to keep up with chorus. It’s a long drive each way, and it’s not just once a week; there are retreats and contests and extra rehearsals, and all of it costs time. And some money, too. I just couldn’t keep it up.

Things went on without me, as they do, and pretty soon I didn’t know everyone in chorus anymore. Which is why this next bit was really a surprise.

City of Flags has a Christmas party every year, and they used to do a gift exchange. In recent years, they’ve foregone that and instead given the money they would have spent to someone else. One year they raised money toward medical equipment for a member’s grandson, as an example.

Last Christmas, they picked us.

They’d heard about our trip to Disney World, and decided that as fantastic as Wishes Can Happen and Give Kids the World both are, they couldn’t think of everything. And so between the chorus and the double quartet (new baritone in residence), they put together an amazing, wonderful, generous gift, and sent it with an ambassador, just before Christmas.

Our lodging and meals were taken care of the entire week we stayed at Give Kids the World, but I desperately wanted to go to the beach. We got three nights there, in large part financed by the generosity of these women, many of them friends, but many others total strangers to me. When we visited a couple of weeks ago, I told them about the day that I spent in a lounge chair in a cabana, looking at the ocean. I went back up to our room to eat, but that was pretty much it. That day? That was all them. It was a day that fed my soul, and I am profoundly grateful.

I don’t know whether it’s cultural or inherent, but it’s surprisingly difficult to receive generosity. It feels good to give, and all the proverbs say it’s the better part of the equation.

But I think it’s important to learn to receive graciously, too. It requires some humility, which isn’t something many of us are I’m all that comfortable with. It means admitting that we I can’t do everything alone. That we I need other people. It’s a dangerous proposition, needing people. It’s messy. I don’t much like messes, but I think I’m getting better at recognizing when they’re worth it.

This here, now, is an example of a very fine mess just waiting to happen.


Things turned out much better than anticipated, due in large part to the extra hands provided by Auntie. (Altogether now: THANK YOU AUNTIE!!!!) Some of the fruits of our labors:


Damages were contained to only one broken egg per boy, and no massive color spills. I think the plastic tablecloth was an astute move, if I do say so myself.

I wish you a good Passover, and a Happy Easter. Whatever it is that you celebrate, may it involve dear friends, and good food, and a worthwhile mess.



Just Capitol

We have a very different view from our bedroom window tonight.


No cows. Just lights.

We drove in this evening on the George Washington Parkway, with the Potomac on our left and the white marble monuments glowing in the last light of dusk. I’m a country girl at heart, but this city is just pretty. I’d have taken that picture, but I was driving. Apparently that’s frowned upon.

We’re taking a weekend away to celebrate our tenth anniversary. And we’re keeping the various babysitters in our prayers.

It feels weird to lay something down on a bedside table and know no one will be coming along shortly to eat it. Or flush it. Weird, but nice.

I hope to post pictures of cherry blossoms tomorrow. The recent cold streak may have put the kibosh on that, though. We’ll see.

Who, now?

We all went to see some friends of mine tonight. Since they were involved in making our fantasy trip even more fantastical, we took along the Mickey ears so the boys could show them off.


You’ll hear more about them tomorrow when I can do them justice (the friends, not the ears). Anyway, we had the boys out way too late. Elias got a little slaphappy, and also developed a world-class stuffy nose in about the last 20 minutes before we got home. He suddenly can’t say Ts or Ms very well. So when I was putting him to bed he called me his crazy liddle bobby.

Punk. But a very cute punk, so he gets away with it.

Enlighten Me

It’s possible that we’ve seen Finding Nemo a bit too often around here as of late, but this question has bothered me for a long time.


Dory has short-term memory loss, right? She says so. How does she know that?

It Slipped My Mind

At least once a day, I feel like I am losing my mind. I can’t remember anything for longer than ten seconds, especially if it’s important.


So tonight I was sitting in the office, paying bills and going through some other paperwork. I sorted through and stacked up a few checks that I haven’t dealt with. (Yes, I know about direct deposit. This entity only issues paper checks.) I didn’t have any deposit slips, so I got up to get one. As I walked out into the kitchen, I noticed a bunch of throw pillows on thefloor, so I picked them up. And then I saw Levi’s used nebulizer set on the counter, so I broke it down and put it in the basin to wash it with the second treatment set. And I remembered that the second treatment wasn’t ready, so I set it up on the counter. There were a bunch of dishes air-drying on the counter, so I put them all away. And Levi was throwing a ball up and hitting the living room light, so I stopped to deliver a lecture.

Then I had to go to the bathroom. And as I was washing my hands, I realized that I couldn’t remember why I’d come out in the first place, so I stood there and thought about it for awhile. I recalled that I hadn’t gotten a deposit slip, even though I’d been banging around the kitchen for at least 10 minutes.

I couldn’t decide whether I have a weird form of housework-induced ADD or whether I’m a character in a very boring If You Give a Mouse a Cookie sequel. But I thought I’d write a blog post about how I’m losing my mind.

And when I sat down in the office to compose it, I realized that I still didn’t have the deposit slip.

It’s a miracle I get anything done, ever.

The First Ten Years

Dear Paul,

I remember a lot of things about our wedding day fondly, but one of my favorites is that we both rushed our vows. It’s possible that the minister paused at an odd time, but I think it was because we were both so eager to get married. So we each said “I will” twice – once in the middle, and once again at the end. And it’s a nice little analogy for marriage, isn’t it? Saying “I will” once doesn’t cut it – we have to keep saying it.


You said today that we’ve seen a lot in ten years. We have. If I made a list of the major events in our last decade, a lot of them would be sad, or hard, or in one case, maybe even tragic. But my memories of those years are not primarily sad, or hard. When I remember the very worst day of my life – just about 6 1/2 years ago – I still cry every time. But even the memories of that awful day are colored brighter by the depth and the breadth of the love you have for your family.

You have made me laugh when I didn’t think anything would ever be funny again. You have made a four-hour blood titration test fun for a four-year-old boy. You have waited patiently through surgeries, taken care of messes I just couldn’t face, and cleaned up the kitchen when you couldn’t care less, just to make me happy. None of that was any fun, but you did it anyway.

I know you’ll be embarrassed by this, but I’m doing it anyway, because you shouldn’t be embarrassed. You should be proud. Of your consistency, and your generosity, and the way that you can love.

Thank you for loving us so well. Thank you for saying you will, still. I love you!