Cooking breakfast

Next lesson: boiled and deviled eggs, and ironing. Um … I might have to call Supermom and borrow her iron. Not sure when I last saw one around here.

I took Ben to an event tonight. I typically drop him off and pick him up, but tonight I went in with him because I needed to talk to some folks. The event hadn’t started yet, so he was wandering around the room. A couple of times he came up to me to tell me he was bored and wanted to leave. This is very unusual for him, because he usually loves it there. The second time he came to me, he had tears in his eyes … not the fake ones … and I started to sense that this was more than boredom. I sent him away to go talk to other kids, and I watched as he awkwardly navigated the room. There were groups of kids scattered around doing their own thing. He didn’t fit in to any of them. He came to me again, begging to go home, and I had him sit down while I talked to my friends. Rather than talking, though, I flashed back to a playground some 35 years ago ….

I was probably the only kid in elementary school whose least-favorite class was recess. I was not coordinated. I wasn’t fast. I didn’t understand the rules of most of the games. When we had free time, as others headed for the monkey bars and teeter-totters and merry-go-round, I would head for the swings. That was my favorite, because it didn’t require a partner. A friend. It was understood to be a single-player passtime.  I felt like I stuck out like a sore thumb … like everyone could see how alone I was. But at the same time, I felt invisible, because no one noticed how lonely I was. I don’t know if I felt invisible because I was alone, or if I ended up alone because I felt invisible. Either way, I hated recess.

I refocused on my son, sitting slumped in the chair, while kids laughed and sang and chattered all around him. He’s not like them. They don’t get him. And I don’t blame them. I don’t often get him, either. But I silently begged just one of them to see him. See him. He may not be like them, and he may be difficult to understand. But he feels loneliness and rejection just as anyone does. I told myself later that it isn’t their job to include him. They shouldn’t be expected to sacrifice their time together to invest in him. It takes effort … trust me, I know this.

One boy, bless his soul, did come up to Ben and say hello. I wanted to tackle that boy with a hug, and I am not a hugger. He looked terribly uncomfortable, but he did it. And I was so grateful. But because it’s difficult to get past “hello,” with Ben, the boy moved on. I can’t blame him.

Over the past year, I’ve tried to be more deliberate in how I care for people. I would sometimes think, “Oh, her sweater is pretty,” but it didn’t occur to me to say it. The Lord would bring someone to mind, and I would spend time praying for them, but I wouldn’t let them know I was thinking of them and praying for them. But somehow, over the past year, it became important to me to say the things I’m thinking. Because people need to know they matter. They need to know we see them. That’s what I wanted on that playground years ago, and truthfully, it’s what I still want today. I think it’s what we all want.

And while it’s easier, maybe, to be intentional in our love for the pretty people, the cool people … what about the different people? All of us matter to the Lord, and we need to know that.  I just think it’s harder to believe that God in heaven loves us when we don’t think the people around us even see us. A dear friend once gave me a print that says, “Yes, I almost forgot, but you reminded me … God still whispers my name.”  I want to be that person who sees and cares for the folks around me, so that I can remind them that as much as I may care for them, the love of God far outshines mine.

So what did I do tonight? I took Ben home with me. Was that the right thing to do? I have no idea. But I couldn’t stand the thought of leaving him there, feeling the way I felt on that playground. I wanted to show him that I see him, and I love him. That he matters. Is he difficult? Yep. Does he often leave me pulling out my hair? Uh huh. Does he matter? Absolutely. He is the Lord’s creation, and He has a plan for Ben’s life. That makes him matter.

Putting up the tree. The cat was a big help.

Don’t let her scowl fool you. She loves all the boxes and paper that Christmas brings.

Ben loves to hear the stories behind each of our ornaments. I remember the origins of just about all of them … not bad for 20+ years of memories!

Kati was banned from the decorating. It was her first Christmas with us, and she was a bit underfoot.

Setting the star

Buddy just tried to stay out of the way.

She settled in nicely.

Santa’s milk and cookies on Christmas Eve

American Girl loot

Video game (no, I didn’t make my bed. Don’t judge.)

Dad made a bed for American Girl Emma.

Dreaming of a Green Christmas. Haha. I crack myself up.

NY Public Library

Ice skating at Bryant Park

We all really enjoyed the Christmas Spectacular at Radio City Music Hall. Our seats weren’t exactly ADA-approved, and Ben’s JORDY didn’t work with their lighting, but he enjoyed it anyway. There was a mix of the Nutcracker, the Biblical Christmas story (with a live Nativity), a video game, and 3D graphics. We had to basically sprint 17 city blocks to get there in time (in the rain, with a million umbrellas crowding the sidewalks) because we couldn’t catch a cab, but that just added to the adventure.

We didn’t even bother trying to get a cab after the show. We oohed and aahed over the Empire State Building’s glow in the clouds as we passed.

Rockefeller Center tree

Of course, all the fun was secondary to the real purpose for our visit: Ben’s steroid treatment. He was in the hospital for four days. When they did the treatment in January, he got doses every 6 hours, around the clock, for three days. This time, he got a dose once a day for three days. He had a few side effects this time that we didn’t notice last time, but they’ve all tapered off and he is doing very, very well. I know he may never be whole here on earth, but he is so close right now. The steroids don’t help his vision (nothing will), and he’s seemed to struggle more with it in the past couple of weeks, but everything else is much improved. We are so very grateful.

They also did an extended EEG while he was there. Four years seizure-free!

Done!

He hasn’t had any major regressions since his last steroid pulse in January. His tics have been minimal, whereas before, they had him contorting terribly. He’s learning well in school and staying on task. He has found a sense of humor, and we are able to communicate well with him, for the most part. He still struggles in many areas, and his vision will not improve, but for now, he is in a pretty good place.

Hospital stays in New York are a different experience. We had a roommate – a little girl around two, and her parents. She was very delayed, so it was like having an infant in the room. Her mom played some of my favorite praise music, so it wasn’t all bad. Catching an elevator there was harder than catching a cab at rush hour. It was insane. There were four elevators, and after waiting for 5-10 minutes, we often had to let them pass us by, as the passengers are already packed in like sardines, and we couldn’t possibly squeeze in. So we’d wait another 5-10 minutes. Generally, that wasn’t a big deal, as we weren’t in a rush to go anywhere. But on occasion, we wanted to go to the cafeteria, or to a floor that had vending (our floor didn’t), or to pick up food we’d ordered in, and it could be a hassle. We thought we had lucked out on Saturday, when the elevator that stopped on our floor (9th) was almost empty. We jumped in, and a few floors later, we realized all the buttons were lit up and we were stopping on each floor. We’d gotten in the Shabbat elevator on a Saturday. On the Sabbath, that elevator is programmed to go straight to the top floor, then stop on every floor on the way down, so Sabbath observers don’t have to press any buttons. Ah, well, as least there was breathing room for a change.

We arrived in the city the day before Ben’s admission, with plans to go to the tree lighting at Rockefeller Center. We got to Rockefeller around 2:30, as we’d heard we needed to get there hours in advance to have any hope of seeing anything. We found a decent place to stand, and were committed to staying there for the 4+ hours until the show started. Then the cops made the group of us move. So we found another good spot. And the cops made us move. Found another spot. That one was for VIPs only. Another spot. Cops. Moved. We finally found an acceptable spot – acceptable to the cops, but we couldn’t see a thing. As in, the tree was around the corner of a building. Ben was fussy, and we were all freezing, and staying would only accomplish bragging rights … so we gave up. (Several New Yorkers have told me since then that unless you know somebody, there’s no way to get near the ceremony.)

Across the street was the American Girl store, and Emma had saved up to buy her own doll, so we went there. On the bright side, it was not crowded at all, as everyone was across the street trying to see the tree lighting. Emma selected her doll, and had enough money left over to get the doll’s ears pierced. She was in heaven in that store! It was so fun to see her traipsing all over. I felt a bit like a little girl, myself. I almost wanted to get a doll of my own!

I wanted to go to Magnolia Bakery afterward for dinner (yep, cupcakes for dinner), but we couldn’t get there. We could see it. It was right across the street from us. But between the tree lighting crowd (half a million people) and street closures for the Presidential visit, we couldn’t get there. We wrapped up the night watching the tree lighting on tv in our hotel.

The next day, we took Ben to the Times Square Toys R Us to let him buy a video game for the hospital. My kids love that store. We hit the storefronts of Macy’s and Lord & Taylor, and later went back to Macy’s to get a blanket for Jared to use at the hospital. Macy’s was beautifully decorated inside, and I especially liked the wooden escalator that made a delightful “clickety-clack” noise all the way down. It’s the little things in life that make me happy.

Ben was admitted the next day, and the fun screeched to a halt for a few days. That was why we were there, after all. I am so thankful that this treatment is available, that our insurance is covering it, that our doctor is willing to administer it, and that my folks so generously finance the travel expenses. We are so blessed. Oh, and I’m thankful for a husband who lets me drag him all over the city. He’s so good to me!

More pics to follow ….

Yes, my desk is a mess. Don’t judge.

We have a 20-foot long blank wall, so there’s plenty of room to expand as the years go on. I ordered the lettering online, and chose some story-worthy pictures to get started: our zipline adventure, our first family horseback trail ride, Ben playing Challenger baseball (a blind kid playing baseball is certainly a story), our first day in New York City, meeting Robin Roberts at Good Morning America, Ben’s rodeo ride, Jared’s first Bucs game, Ben’s first roller coaster ride, Ben’s elephant ride, etc. As time goes on, I’ll add story-worthy pictures to the Wall. We will be building our family’s story, and as time goes on and the photos spread farther and farther out, we can watch the kids grow.

When Ben was first diagnosed as being vision-impaired, he asked me why he had to be blind. I told him I didn’t know, but that we were going to make an adventure out of it. He asked me how we would do that, and I honestly told him that I didn’t know, but that we would. I think of that often, as we attempt new things, things worthy of the Wall. Vision impaired or not, we’re not wasting time. We’re making a story.

Here’s one more perk of the wall: it’s a sort of litmus test for choosing our activities. Sometimes I’d really rather just sit on my couch. It’s very comfy. But given the choice of sitting on the couch or, say, taking the kids to feed the homeless, I ask myself, “If I were to take a picture of this night for the Wall, what would I want it to be?” A photo of me on the couch doesn’t tell much of a story.

We’ll see how well that works tomorrow, though. Last October, I started running (more like jogging) with the goal of running a Turkey Trot this year. For the past year, I have run nearly every day. And yet, I am still not fast, and I still can’t run that far. I can do 3 slow miles on the treadmill, but that’s different from 3 road miles. Tomorrow, there’s a Turkey Trot close to home, and I’m thinking about doing it, but I’m scared. When I tell people that, they look at me like I’m crazy and ask what I’m scared of. That made me think … I hadn’t really pinned down why I was scared. I guess I’m afraid I’ll get lost (I have a wickedly bad sense of direction), or that I’ll finish last, or both. Folks tell me the path is clearly marked, and that I likely won’t finish last … but that it wouldn’t be the end of the world if I did. Somebody has to! So I keep waffling … I’m going to do it. I’m not going to do it. What it may come down to is that Wall. How cool would it be to add a picture of me crossing the finish line of my first 5K?! Much cooler than a photo of me sleeping in, right?

(Tabby Ryan, this princess reminded me so much of  you!)

Emma and her friend Megan

You know I had to visit New York!

Good girl, Emma – check your light before you go!

A double-decker carousel – how cool!

Emma and her friend Ibis (photo by Heidi Harrill Mattson)

(photo by Heidi Harrill Mattson)

We made tunics during our study of the Egyptians’ clothing. Emma enjoyed this study – she’s all about fashion.

We also made some clay pots using the coil method.

We just finished reading Patricia St. John’s Star of Light. This is the second book we’ve read of hers, and we really enjoy them. They are wonderful read-alouds with a well-delivered message. I’m also reading Corrie Ten Boom’s The Hiding Place to the kids. This has nothing to do with our curriculum, but it is my all-time favorite book, and I felt it was the right time to share her story with them. It has been such a blessing to see them soaking it up, and I always enjoy re-reading her story. They’ve picked up some geography and more recent history, as well.

This week and the next few, we’re taking a break from our “fun” curriculum and just working on the basics: reading, math, grammar, spelling, handwriting, Bible, and P.E. (we normally do all these plus the other stuff). We just have so many appointments and holidays and classes and field trips these next few weeks, we don’t have time for everything. :-/

Last weekend, we went to a weiner roast at our friends’ house. Can’t go wrong with s’mores and hot dogs! It was such a pleasant evening out.

Cookies I made for the weiner roast. Cute, right? Found ‘em on Pinterest.

A few nights later, we had a fun night out at Mom and Dad’s house for Halloween. Pizza, dressing up, and candy!