Thursday, December 31, 2009
I hope you all had a great holiday and have a very happy new year!
Saturday, December 19, 2009
Well, the east coast storm hit Alexandria and completely messed up the Murray’s Christmas plans. We were supposed to leave this morning for Wyoming. Instead, I’m sitting at home watching the snow fall.
Right now, this is what my car looks like.
I’m bummed. I want to be in Casper. I want to be sitting next to the fire that my dad built while my mom makes a wonderful dinner. I want to be watching Ella and my nephews play. I want to talk to my brother and sister-in-law. I want Ella to see her grandparents, aunt, uncle and cousins. I’m totally and completely bummed.
The good news is that it can’t snow forever, and for now the forecast is showing that by tomorrow morning the snow will have stopped. Our flight has been rescheduled for Monday afternoon. This cut our trip short by 2 days, so I was able to barter with the airline and now we get to return 2 days later, which means we won’t lose any time with the family.For now, we are sitting in our warm house, watching a movie, drinking egg nog, and waiting for the snow to stop.
Tuesday, December 15, 2009
Here’s the deal. Ella’s 2…2 year olds are complicated beings. Sometimes I will find something that I am convinced Ella will love…and she’ll hate it. Other times I’ll grab some little toy from the $1 bin at Target, and it will become her new favorite toy for months. So, what I’ve been doing is taking her to Target with me, she and I go into the toy aisle and I grab what I was thinking about getting her. She plays with it as we walk around the store and get other needed items, then as we’re about to check out I determine if she likes it enough to actually buy it. Sometimes, if I’m still unsure, we’ll bring it home and I let her play with it for a few minutes just to be sure. When I’ve decided that it is the perfect gift for Ella, I wrap it. I just hope she forgets what they were by the time we unwrap presents for Christmas.
Another confession, I let Ella have a lollypop for breakfast on Saturday…and Sunday.
Finally, when you see Ella and her hair looks a bit…um…greasy, think nothing of it. Ella’s hair has been really dry and her mom (along with Metti) thought it would be a good idea to pour baby oil in it. Yeah…now she looks like we haven’t washed her hair in months. Reminds me of the time when I was about 6 and I found Brylcreem in my parents’ bathroom. I decided to put it all over my hair. Not a good idea.
Ahhh, I feel better now that I’ve gotten that off my chest.
Saturday, December 12, 2009
Wednesday night we took Ella to her first viewing of the First Baptist Church of Alexandria, VA Living Christmas Tree (LCT). If you don’t know what a living Christmas tree is, here’s a picture.
Imagine choir risers that are in the shape of a tree and covered in greenery and lights. The heads of the choir members are the ornaments. While the choir sings, lights on the tree are synchronized to the music. There is a play that takes place between songs, and a full orchestra accompanies the choir. It’s unlike anything you’ve ever seen. It’s truly…TREE-TACULAR!!!
I sang in the LCT one year. I started singing in choir in 4th grade (shout out to the Casper Children’s Chorale). I have been a member of girls choirs, combined choirs, All-State Choir, Show Choir, Jazz Ensemble, select ensembles, worship team, Church choir, you name it…I’ve pretty much sung in it. But this…this was a whole new experience for me. And I was embarrassed that I was only 27 and was struggling through, while there were people twice my age who didn’t even bat an eye at all the hard work. Each year they do 7 performances…yes, 7 (8 if you count the Wednesday night dress rehearsal). Thursday night, Friday night, Saturday at 2:30, 5:00 and 7:30, and Sunday at 5:00 and 7:30. It’s intense. Don’t tell anyone, but during one of the rehearsals I passed out. I had been working all day and had rushed from the office to LCT practice without having dinner, and it was hot. That’s when I decided that I was too old for this. Ever since then I’ve been a spectator, and every year I love going to the LCT.
I really wanted to take Ella this year. I knew she would love it! She loves singing along to the hymns at church, and she often sings along with the soloist…even though she doesn’t know the words. Add to that the fact that she’s VERY excited about Christmas and Christmas trees, and that she always asks to listen to Christmas tree music, I just knew the LCT was for her. Wednesday night was the dress rehearsal and their Special Friends night, the church invites people from the special-needs community to attend the show. So we thought this would be the best time to take Ella. If she decided to sing along with the tree, most of the people around her wouldn’t be bothered…and they might even join in too.
Ella didn’t sing along. She was so mesmerized by the lights and singing, that she barely even blinked. She sat in my lap the whole time just staring at the tree and lights. After each soloist sang she would say, “Good Singer!” and that was it. She loved it! They always end the LCT with the Hallelujah Chorus, and as is tradition, the audience stands. This was when Ella decided to start singing. She sang along to the whole song and loved every minute of it.
Afterward we went to the Big Yellow M (McDonalds) with some friends and got hot fudge sundaes and Ella got French fries. It was a great family night out. I can’t wait to take Ella again next year. Someday she’ll be singing in the tree!
Monday, December 7, 2009
Ever since Ella was born I have trouble defining things as “normal.” I always feel like I have to put the word in quotation marks because I have learned that “normal” means different things to different people. For us, our life is normal…it is normal to take 2 hours to give our child a bath and change her bandages…heck, it’s normal for us to have to do bandages at all. And when I look at others who have a “normal” family and “normal” lives, well, the truth is that for us that is completely abnormal. No matter how long we live, we will never know what that feels like.
I say all this because the winter brings us as close to normal as we’re ever going to get. Ella’s skin does great in the cold weather! We have to put a bit more lotion on than usual, but other than that she looks great (don’t misunderstand…we still have her arms, legs and torso wrapped completely). Right now (knock on wood) her face is completely clear, other than some milia and light scars. So, this weekend we went to Home Depot to get our Christmas tree. Ella was beside herself with excitement. She was completely bundled up. Snow boots, pants, sweatshirt, winter coat with hood pulled up, and mittens. The only thing you could see was that sweet little face. As we were walking in I said to Joe, “Ella looks like she’s a normal kid. She’s so bundled up that you can’t even tell she has EB.”
I often wonder what it would be like to go into a store and not have countless people stare at Ella. I can see the wheels turning as they’re trying not to make their stars obvious. We used to get bombarded with questions whenever we ventured out. Everyone wanted to know why she looked that way, and most of the people knew someone who “looked just like that” and it ended up being an allergy, rash, the water, etc. If I had a nickel for every suggestion we have received by complete strangers, Joe and I would never have to work again. I don’t know if it’s because Ella is getting older, or if it’s because my approach has changed, but is seems like the questions have died down. I used to be very on guard every time we ventured out…staring everyone down who looked our direction for longer than 30 seconds. Waiting, with guns drawn, for them to ask what was wrong. Now, I just go about my business. We walk up and down the aisles talking and playing, and I barely even acknowledge those around me. If I make eye contact with someone, I just give them a friendly smile and say hello, and go on my way. I still feel the stares, but I figure if I act like everything is “normal,” then they will too. And it seems to work.
So Saturday, in Home Depot, I got a small taste of what it would be like to live without stares. To have people looking at Ella simply because she’s cute, and not because they want to know what’s wrong. She was so excited to get a Christmas tree. As we were walking around looking at all the trees, I asked her what kind of tree she wanted. She yelled, “GREEN!!!” Given that we were looking at real trees and all of them were green, I laughed, and the woman next to me laughed too. We laughed because it was a “normal” 2 year old response.
Even though Ella’s skin is different, in every other way she’s a very typical 2 year old. I wouldn’t change her, and I wouldn’t even change the stares…I have learned a lot from them. Our family is perfect…our wonderful, happy, “normal” family.