Category Archives: Wish Trip

Dreaming of Warm, Sunny Days

We’re having snow days this year. A lot of them. More than I remember ever having when I was in school. (Yes, I know I sound like a grouchy old woman. Hush.) Paul, though, remembers the winter of 1978, when there were 22 snow days. So it could definitely be worse.

I had taken today off to try and get a bunch of stuff done around the house. So it’s good that I’m not trying to work while the boys are rousting around today. But it does dampen my grand plans for the day. I got out the tent and tunnels. It should distract them for awhile.


I had yesterday off too, for a company holiday. I don’t think I’ve ever worked anywhere that took President’s Day, but I’m not complaining. I spent the day continuing the decluttering effort I started on Sunday. There is this closet by the front door in our house. It’s kind of hard to explain, but it’s built over the stairs to the basement, so there are these deep, wide shelves built into it, and it’s HUGE. Which seems to mean, unfortunately, that I just shove more crap in there. I dreaded opening the door.

But I dragged everything out (WHAT ARE YOU DOING MOM?!!???!? WHAT IS THAT?!? WHAT ARE YOU GOING TO DO WITH THAT?!?  MOM?!!?????) and sorted ruthlessly. The amount of stuff that went either to the trash or the donate pile was shameful. Or impressive, I guess, depending on how you look at it. I did get it organized, and I’ve been going over and just looking at it because it makes me so happy. I even made my sister admire it. 

I made two more big garbage bags of stuff from other rooms and shoved them in the car. As I drove away from the donation center, I felt freeeeeeeeeeee. How do we accumulate so much stuff?

In other news, it’s been a year since our family went on our magical, amazing wish trip. Just thinking about it makes me smile. The weather was really so beautiful, and we had such a wonderful time. And we made such friends!

I got the nicest surprise this Sunday when a comment popped up on on the blog from Jess and Maggie. They’re the beautiful girls in the picture below, and they were our special friends during our week at Give Kids the World.


They were there on a school volunteer trip with their teacher (below), who was just as great.


This week, the girls are back at the village, and they thought of our crazy boys. I’d shared the blog address with them last year, and they remembered it!

Jess and Maggie, I hope you’re having a wonderful time again this year, and making another family feel as treasured as we did. You’re seniors this year, I believe, so it’s really not very long until you’ll be going off into the wide world on your own. I’m so glad that we got to meet you. I don’t know what your futures hold, but no matter what it is, your kindness will serve you well.

And soak up some sun for us! We’re a little buried right now.


Ah, memories.

When we went on Levi’s wish trip, everything was just pristine, everywhere. Disney’s dedication to perfection is legendary, but honestly, it was the same at Give Kids the World, at Universal, and at Sea World. Everything is immaculately groomed.

Understand that my standards of cleanliness have degraded somewhat in recent years. Mostly I’m just happy if my socks don’t actually stick to the kitchen floor. For example, I know that I could stay up tonight and clean the stovetop and mop the floor. But I’d much rather sleep. Besides, the minute I get it really clean, someone tears a bag of quinoa or draws on something with a paint marker that Paul brought home in his pocket after work. What’s the point? I’m just going to power wash the house when they’re both 25.

So the level of care we saw in the parks down there was both impressive and intimidating.

And the day we went to Sea World, we were walking around admiring everything as we decided what we should go to see next. People, they have a little garden thing with killer whales sculpted out of shrubbery. Color contrast and everything. That is dedication.

And all of the sudden, I didn’t know where Levi was. He wasn’t hard to find, though.

I looked over my right shoulder, and there he was. Pants down around his ankles, hindparts bare to the world, urinating into the perfectly manicured pansy patch.

I took a picture:


Just kidding. I didn’t take a picture. I turned to Paul, and tilting my head to the side, I said, “You see your son over there?”

And as his face broke into a gigantic grin, I hissed, “YOU deal with him,” and I walked away and pretended I had never seen any of them before in my life.

And I was thinking today about that day, and my reaction, and how I might change that reaction if the same thing happened today. And you know what I would do differently?

Not a blessed thing.

Small Packages

Levi got a little package in the mail today. It was from Give Kids the World, and I couldn’t imagine what it could be. (Though I was pretty sure it wasn’t a bill. Which was a welcome change from the rest of the mail.)

It was … a rabbit. Mayor Clayton, to be specific.


He and his wife Ms. Merry preside over the village at Give Kids the World. Ms. Merry was at our first breakfast at GKTW, and Levi was overjoyed to meet her.


Later that week, Mayor Clayton himself showed up in his nightshirt to tuck the boys into bed.


I can’t say it was my favorite part of the week, but only because there are too many wonderful parts to have a favorite. It was really a lot of fun.

Levi got the rabbit, it appears, because he was supposed to get one while we were there, but they were out of stock. They didn’t want us to miss anything, so they mailed it out now.

He’s a very nice rabbit. But even more than Mayor Clayton himself, I am grateful today for the memories he packed in his cummerbund.

Everybody’s Gone Surfing …


I just found this picture from Give Kids the World, and it’s too good not to share.



One of the amazing things at Give Kids the World is the pool. It’s enormous and heated to nearly bathwater temperature, and shallow all over, so you can really pack in the kids. There’s a zero-degree entry ramp and PVC wheelchairs provided with straps. Kids that hardly ever get to go in the pool can go.  There’s a pirate boat that serves as the backdrop for the Pirates and Princesses party every Friday night, and also as a screen for movie nights. Pretty fantastic.

And in the “surf shop” you can stand on a gigantic board and pretend to catch a wave. The boys don’t really get surfing at this point, so there they are with their special friends J and M. This was taken by Paul on the day I was so sick. It’s one of my favorite pictures from the trip.

Good memories.

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.



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.