Recently, Christian and I took our summer trip to Atlanta to visit our family. It happened to be over the week of his 23rd birthday. That is hard to believe...23! Where did the time go? Well, we contacted the wonderful Pulley family, who live in the area, to see if we could meet up with them. Another fantastic family, the Penningtons, were invited to drive down to meet as well. this opened up a whole new twist. I was then contacted by other families who asked if they could crash the party. I was amazed at the comfort level that these awesome families had, feeling so at ease in even asking to "crash". As the excitement grew, so did the group. I was loving it, and Christian was beside himself. He gave up a 7 day cruise to meet these amazing families.
The party could not have gone any better. We all gathered together and blended together like a close knit family would. Since everyone was scattered all over the city, the night before we split into two groups and spent quality time together. Our group went to dinner and then walked over to the park to sit on the lawn with over 200 people to watch a Beatlemania concert and let the kids run free on the playground. Everyone was relaxed and loving life.
When we all met the next day, for our all day and night gathering, we all watched the children in amazement. They all got together as if they had known each other all their life. All were so calm and well behaved. No hyperactivity! No screaming! No running around! No chaos! They found things to do. What the younger kids found to do brought back such memories for me. Each one found repetitious things to do quietly throughout the day. One chose to move toys from one large bucket to another, another child chose to move the canned drinks from one ice chest to another, another child chose to move water from one bottle to another, and they all enjoyed lining up the cars on the floor. The trampoline was a hit, as was the tree house, in which one child chose to bring the pulley, with the basket attached, up and down. The trains going by hurt every one of their hypersensitive ears, yet if there was a wall to dull the noise, they were jumping with excitement. So, trains and cars are in for both the boys and the girls! Oh! I remember those days!
When all these kids came together, it was like looking at siblings. They have a look about them that is unique to PTLS and the CMT. The flat, wide bridge of the nose, the eyes, the slight "hook" of the nose (profile view), the long slender fingers, and the posturing of the hands. We discussed the dental issues, the high arch of the palate, the loss of teeth and the size of the baby teeth. The possible submucous cleft palate, which is what Christian had. This was repaired when he was 4 years old. I thought for the longest time that he was the only one, but I have learned that this is something that is being seen in the kids. The shortness of the palate at the back of the throat, which can cause speech issues with some sounds. Our doctors told us to NEVER remove Christian's Adenoids (which are often removed with the tonsils), since it will cause speech issues for life.
These kids give such love to everyone. They socialized very well with everyone. When they had a bit of a panic issue over a fear (like a bug), they were easily calmed by whoever was standing there. The mothers were able to leave their kids with the dads (some their own and others who belonged to other kids)to play while they went for a little shopping spree. Leaving the kids with "strangers" was something that was very freeing for every mom. No child cried for mom, no child was inconsolable at any time, and all had smiles on their faces. What joy! Life is good for these kids!
The parents not only saw, but felt the bond between us all, those who were there and those who could not attend.
This community of PTLS families is one to be proud to be a part of. Myself and a few other moms are already planning the next gathering, only this one will be an official one. I thought I had everything planned, name tags, photos before the event began, and an interview video (soon to be released), but I will tweak the things that need to be for the next gathering. Love to All! Julie
Video of the pics taken- http://www.vimeo.com/14200333
