First things first, I want to introduce you to Megan.
There are a lot of interesting things about Megan. She volunteered at the Library of Congress this summer. To get there she took the metro and walked to the building. This week she’s a counselor at Camp Discovery. Last year at camp she was able to climb a rock wall for the first time. She said it was very cool. She’s really into politics and volunteered for the Obama campaign even though she wasn’t old enough to vote.
I’m telling you all this because Megan also has RDEB, just like Ella. I read an article about Megan and in the article it mentioned that she was going to be spending part of her summer in DC. Of course I put my EB contacts in motion and was able to connect with her. It was such a pleasure and encouragement having Megan over for dinner.
In one sense, Megan is a pretty typical RDEB. Her fingers fused when she was still pretty young, but she can handle things really well with her hands the way they are. She also has a g-tube, but still sat down and ate some spaghetti and chocolate cake with us. But in another sense, Megan is much more than a girl with EB. She doesn’t let anything slow her down. Her attitude is, “If I have to pop a couple of extra blisters at night because I did something fun that I wanted to do, then I’ll pop the extra blisters.” She chooses not to let her EB dictate who she is and what kind of life she’s going to lead. She is even going to college in NC, but her mom lives in FL. She’s going to live in the dorm and live the life of a normal college student because she wants to. She didn’t seem concerned with being away from her primary care taker for college, or walking from building to building. She wants to go to Duke for college…so she is. What an encouragement!
As I mentioned, Megan was Salutatorian of her class. In talking about this great accomplishment, Megan mentioned that she really liked being smart because it gave people something to talk about other than her skin. It wasn’t “Megan has a skin disease,” but rather, “Megan is really smart.” I felt like I really could relate to that. I know that people have difficulty looking past Ella’s skin. I love that she is smart for so many reasons, but one of my favorite reasons is because it gives people something else to see in Ella. It gives them something else to think about when they hear her name. It was so great talking to Megan and hearing her positive outlook on life. What a great inspiration to us.
Ella is growing more and more each day. She is still very into her music, but it has taken on a whole new form. Now she likes to finish her songs with a big “Ta Da!” Even on Sunday Jenni (the one who made the CD for Ella when she was born) was singing in church and when she finished Ella said “Ta Da!” She also prefers to sing solo…I think she gets this from her Paw Paw. When she’s singing a song and Joe and I start to sing along she says, “No Sing!” then goes about singing by herself. We recently got Ella a new DVD called “Choo Choo Soul.” Ella loves it! She listens to the music and dances along and her favorite new move is to clap her hands above her head.
Friday was Joe’s birthday…he’s 34. Ella got him a new Blue Tooth since his other one broke, and I got him new shoes and a new leather folder to carry files in for meetings. We also went to Hana Tokyo for his birthday dinner. Hana is our favorite restaurant and Ella really enjoys the Hibachi show. Whenever they flare up the fire she says “Wery Hot Fire!” Grammy Janet came in on Saturday to help celebrate Joey’s birthday and Ella had a lot of fun playing with her all day. She even got comfortable with Grammy’s friend, Burnadette…Ella just called her Burn.
We had a busy but fun weekend. Saturday we got a refrigerator delivered for our basement. We’ll use it to store extra food, soda, meat, etc. We’re so excited to have it! Sunday morning we went to church and Ella actually seems to be doing much better with the shyness. We still have a long way to go, but I have noticed some improvement. Sunday afternoon we went to lunch with Jenni, Russ and baby Millie and afterward they came to our house to visit. Sunday night we went to Old Town Alexandria to walk along the water and got some ice cream with church friends. Sunday night we were all tired and slept really well. The weather was beautiful this weekend and we were able to eat several meals outside. One night we opened all the windows in the house and slept with the cool night air instead of the air conditioning. We count ourselves so blessed this summer because the weather hasn’t been as hot and humid as is traditional for DC. I feel like God has kept the weather at bay just for Ella, and we are very appreciative. She’s been able to get outside and play and her skin has been doing pretty well. Of course we haven’t hit August yet, but for now we’ll thrive in the cool.