"Long Live the Alamo"

We are so lucky to be a part of an awesome group of people who are involved with the Chromosome 18 Registry and Research Society (aka...Deak's syndrome people). Every year they put on an amazing conference which involves updates on the latest research for our kids, fabulous doctors who have devoted their lives to helping our kids, and really amazing people who are parents and friends of our kids. This year the conference was in San Antonio, Texas where the actual research center is located.

I have never been to Texas, and was really excited to see if Texas was actually like it is on TV.

It is.

*I saw real spurs that could kill someone in the lobby of the hotel. The man wearing them was meeting his girlfriend who said while greeting him, "I even put on some lipstick for you."

*The police wear cowboy hats and boots.

*And, they seriously pledge allegiance to the Texas flag in school each morning.

The people who live there really like Texas, which is good. I just didn't understand the situation entirely until I made a "faux pas" in the Alamo.

Being tourists in a new city, we wanted to see the Alamo, which they say is the number one tourist attraction in the country. The funny part is, the Alamo is now located directly across the street from "Ripley's Believe or Not Museum" and the "Wax Museum." It is pretty commercialized considering all the love the native Texans have for it. Apparently Texas has passed a law declaring the Alamo sacred ground, so you have to be quiet while touring it. We were inside, trying to be quiet, and I turned to Blair and said, "Long Live the Alamo!" He just looked at me, (along with everyone else around me) and smiled and shook his head. He then said, "Jenny, it is "Remember the Alamo." Same difference right? Guess not. I was a little worried I might be asked to be in a shoot off or something when I walked out. Luckily, they did not, I don't own a gun (which may have been against the law in Texas).

On the "touristy" side...We did some fun things together.

Riding the boat for the Riverwalk tour.

Eating at Rainforest Cafe for Abby's birthday.

Eating at Hard Rock Cafe, which we discovered Deakon LOVES because of the music playing.

(Playing air guitar :)

And mostly, just being together.

On a more serious side (actually dying at the Alamo would've been serious I guess),we got the opportunity to meet another five families who have a child with Ring 18 syndrome. The children are amazing.

Caleb, who is going into third grade and mainstreamed with other students. He can read at grade level and write. He is very bright. (You can see he is writing in the picture).

This year we were excited because there were little ones! Last year Deak was the only little child...here are a few friends.

Emily. She is an amazing little girl who has been through so much. She just recovered from having a surgery which helped her hip dysplasia. She is also blind and has a harder time hearing. Her parents are amazing and probably the most positive people I have ever met.

There were six of us compared with the hundred or so other families there whose children have a different syndrome associated with Chromosome 18. It feels like home when we meet the families. We may have only known each other a few minutes, but we feel so intimately connected with the depth of understanding we have for each other's situations and the love we have for our children. I am motivated, inspired and committed to doing better and more for the research that will help Deak and future children, after spending time with the families. Abby also has such a good time. She gets to connect with other siblings who understand what it is like to have a brother/sister with special needs. She also gets to go to a fabulous day camp while we attend the sessions. We never want to leave, and cry when parting ways with the families we have only known a few days. I cannot express how much it means to have these children and families in our lives. They are amazing people and I learn so much from them.

"Long live Ring 18."