Friday, July 27, 2012

You must be very special!

David, Eli and I spent a few days last week in Virginia at a conference for people with RTS and their families. Rothmund-Thomsen Syndrome or RTS is a very, very rare genetic disorder that causes a list of things to be different. All people with RTS have the skin rash you see on Eli. They can have radial ray defect (missing radius bones and thumbs, like Eli). They can have short stature (meaning they grow slowly, like Eli). They can have missing patellas. The list goes on. Actually, I'm not sure a comprehensive list of everything an RTS person can have even exists.

We really enjoyed the trip. I loved it when Delaney, a 7 year old, met Elijah for the first time. Quickly after sitting by each other Delaney says to Eli, "I only have four fingers." David, standing behind Eli tells Delaney, "Eli only has four fingers, too." Delaney's eyes bugged out and her mouth dropped open. She didn't say anything for a few beats and then exclaimed excitedly, "You must be VERY special to only have four fingers." What a treat! I could tell so clearly how Delaney's parents have nurtured her. Eli, on the other hand, doesn't yet realize that if he counted fingers on someone else's hands that they would have one more than he does. He'll know soon enough, but I'm guessing he's going to think there's something wrong with the rest of us.

We were also able to take a few excursions into D.C. Eli got to see the Air and Space Museums and the American History Museum. He loved the exhibit with the much, in fact, the rest of the museum was of no interest. Even the "real" Kermit the Frog...huge let down after seeing giant trains.

I told David during our trip that I should be wearing a T-shirt that says "Yes, you just stared at my kid and then looked up at me to see me staring at you staring at my kid. Awkward!" But, the honest truth is I know most people mean good when they see Eli.

Those of you who know Eli (and his dad) know that they are rather loud people. You can be a distance away and know where to locate Eli. In the airport terminal, people watch Eli. This particular time, he was playing in the floor with his new airplanes from the Air and Space Museum waiting to board his plane home. Ironic. Anyway, when we finally arrived in Tulsa at 10:10 p.m., David and I did our usual decide who's doing what so we can conquer this scenario and decided I would go get the car and pull up to the front to get Eli, David and the luggage. I took off pulling one suitcase with me. A woman about my age (very, very young), chased after me in the terminal, "ma'am, ma'am" (I should have told her we are the same age and very young and "hey" would have been fine.) I turned to see what the clamor was...not thinking she wanted me. But she ran up to me and said "Can I give you a hug?" I agreed and she hugged my neck saying "you all are doing a great job." I teared up. I said, "it's not easy." We exchanged a few more words and I knew that she (and a whole host of others) had watched me and David and Eli do our thing where we embrace what we have and make the best of it. And because we've done that for the last 5.5 years, Eli shines!

I have this special friend who lives in OKC named D. I can always share my deepest feelings with her. Recently, after listening to me describe how sometimes my life is just hard, she reminded me that God is building a Kingdom. I've thought about that a lot since. He's not just building my family...if he were, I suppose life would be super simple...but rather he is using us to reach many, many more in his work of Kingdom building. I'll keep pondering this, but I really like it.

I love you all and I appreciate your continued prayers for Eli. Of particular interest to us right now is that we pray Eli will never have to face cancer of any kind. His genetic syndrome poses a predisposition to childhood cancer. A really, really scary thing for me and David.


1 comment:

Anonymous said...

Hello! My name is Danni, my boyfriend and I had the honor of meeting, David, Sophia, and Eli at the TASM today. I just wanted to let you know how incredible your family is and that Aaron and I will keep you guys in our thoughts and prayers!

In Christ,