Let us eat cake

We’ve celebrated two of my favorite people this month! Jared’s birthday was February 2, and Mom’s birthday was today. I am so blessed to have them both.

The adventure

Things are shaping up for Ben’s appointment at the NIH. I’ve spoken with the patient care coordinator and gotten an idea what to expect.

The study in which Ben is participating is the Clinical and Molecular Manifestations of Inherited Neurological Disorders. The study is what they call a “natural history study,” meaning the doctors focus on diagnosis, but don’t include interventions or treatment. Doctors have previously decided that Ben has an undiagnosed genetic disorder. Because uncommon genetic disorders are very difficult to diagnose, we have had to experiment to find an effective treatment for him, and we don’t know what to expect in his future. We certainly didn’t see the loss of vision coming.

This study includes patients who, like Ben, have an undiagnosed genetic disorder that affects the neurology of the patient. Dr. Carsten Bonnemann will direct the three days of studies. The first day will consist of meeting with the team to go over Ben’s history, and a PT evaluation. On day two, he will have a sleep-deprived EEG and an electromyogram (EMG). On day three, he is scheduled for sedation so they can do an MRI, a lumbar puncture, and an examination of his retinas. These are the tentative appointments – they may add or subtract tests as they see fit as we go along.

When I explained to Ben that he had been accepted into the study, and what it would entail, he said, with much enthusiasm, “I’ll feel like an alien being probed by scientists!” No White Coat Syndrome here! I do ask for your prayers for him, as some of this will certainly be unpleasant for him.

The NIH is covering three of our four plane tickets, all the tests involved, and our accommodations at The Children’s Inn … which looks like a fun place! I’ve been told it is right on campus, across from the buildings where Ben’s appointments will be, so we won’t need transportation. We feel very blessed. Our prayer is that, at some point, we will know what it is that Ben has. Perhaps that would lead us to treatments. Maybe not. At the least, we hope to know what to expect down the road.

Speaking of treatments, the “experimental” steroid therapy continues to make a huge difference. Praise God! I keep saying that Ben has had the best year of his life since he had that first treatment in January 2011. I am so thankful that he is able to partake of life and enjoy it in his own way. What a difference!

Some of you may have seen my post on Facebook, that we aren’t able to get tickets to tour the White House, the Archives, or the Bureau of Engraving. I’d really hoped to get inside those three, but we’re going to be there at a busy time of year, so all the tickets are already taken. I still hope to see the White House exterior (we were there once when Ben was 9 months old), as well as Ford’s Theater, the Museum of American History, and the Holocaust Museum (we’re finishing up Corrie Ten Boom’s The Hiding Place in school). We fly in the day before his appointments begin, so I’m hoping we’ll have time to explore that afternoon. We fly out late the day after his last appointment, so I’m hoping we’ll have more time for fun that day. We’ve got to cram in some adventure whenever we can!

You see, I was thinking back to the first few weeks after Ben lost his vision. He was struggling with schoolwork one day, and he said to me something like, “I don’t want to be legally blind. Why did God let this happen?” I didn’t know how to answer him. I was honest with him, saying that I didn’t know. “But,” I added, “we’re going to make it an adventure.” He asked me how we would do that, and I honestly answered again that I didn’t know, but that we would. And we are.

Weekend fun

Last weekend, Jared and Emma went to the city’s Father-Daughter Dance. Emma was so excited. She loves her daddy, and she loves to dance! Oh, and she loves any excuse to dress up. The dance was sold out, which we thought was wonderful. There were lots of dads and daughters there doing the YMCA, snacking on candy and cupcakes, and making memories.

I had a wonderful weekend, myself. A dear, longtime (not old!) friend came to visit for a few days. We shopped, ate at Cheesecake Factory, laughed, ran a 5K with a fun group of friends, ate Cinnastacks at IHOP, laughed, went to the beach, ate at Crabby Bills, laughed … I truly treasure my time with her.

Making homemakers

I have this friend who is a supermom. Seriously, I think she has a cape and everything. So when I saw the home-ec type curriculum she was using with her daughter, I knew it must be a quality program. I’ve been wanting something to intentionally teach my kids the basics of cooking and cleaning (it also includes sewing, but we all know I’m going to skip that section), so I ordered Future Christian Homemakers and started a few weeks ago. The kids love it! I’m doing the devotional parts with just Emma, but the cooking and laundry and cleaning with both kids (Ben has wanted to be Emeril since he was 4 years old, so I couldn’t exclude him from cooking lessons. And what kid doesn’t need instruction in cleaning?!). I like how systematic the curriculum is, with step-by-step instructions. The kids love the feeling that being independent gives them. Our first lessons covered laundry from start to finish, and cracking eggs to make scrambled eggs and French toast.

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.

 

Seeing

To blog this or not to blog it … I’m having trouble deciding. In an effort to foster understanding of special needs … and basic human kindness … I think I might.

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.

Traditions

I’m glad I saved my traditions post for today. Having un-decked the halls all day, it’s fun to look back at the memories we made this Christmas.

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.

NYC part 2

Checking out the Lord & Taylor window

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!