Yesterday I had the privilege of attending my Grand son's very first field trip ever with his special needs class from Southside Elementary. Eddie Jett has P-136 deletion syndrome. It's an extremely rare, genetic disorder. Our little buddy is almost 4 years old, and just took his first steps this past summer. He's walking, (almost running), everywhere now, but has little battle wounds because of his balance issues. Eddie Jett had to have a Mic-Key button implanted when he was just a couple weeks old. This enabled us to feed him through a G tube directly through his stomach. When the button would come out on occasion, my daughter Skylar was such a trooper, able to reinsert it like a pro. It came out last winter during the massive snow storm we had here in Oklahoma, and Eddie Jett must have hidden it. Since Sky couldn't get him to the Dr. she decided to leave it out and start feeding him everything orally...eating and drinking without Mic-key button...check!
The syndrome has affected his speech, but he communicates like a charm. Skylar loves to sing the song by Allison Kraus, "You Say it Best When You Say Nothing at All". She sang this as her talent when she won the Miss Fall Festival Pageant in her Junior year of high school. Well, Eddie Jett doesn't have to say a word. We totally understand him with the sign language he is, (and we are), learning and the precious emotions he displays. He's so smart. So tough. So determined. So perfect.
Sitting in the Pizza Hut with all the adorable and amazing special needs children and their families, I felt so blessed. It took a bit longer to get where we were going. It was loud. Table manners were a toss up. It got a little messy. But it was the most fun I've had in a long time. There are no facades put up with these families. There is no competition over who has the highest scoring honor student, or the highest scoring athlete. There was only love, compassion and pure joy. I'm not saying there aren't heart breaking moments for these families. We've had our share with little Eddie Jett, but the little, simple moments in life mean so much and you learn to enjoy each and every accomplishment and take on every challenge with your head held high and hands held tight.
I've found myself developing an intolerance for certain things since Eddie Jett's come along. A few days ago I was doing my hair and had the Home Channel was on. There was a gentleman going on and on and on about how he was flipping a house and the back splash had not arrived to be installed for his open house that week. He had put in marble countertops, expensive wooden floors, etc. and was complaining as though it was the end of the world because his exquisite kitchen backsplash had not arrived. It was going to RUIN everything! I mean he was back-splashing this and back-splashing that...He was SO utterly UPSET...this was going to completely DESTROY his entire project, not having this perfect backsplash! He just knew the house would NEVER sell because of the late arrival of his high dollar back-splash. After a few minutes each time he said the word, "backsplash", it felt like someone was piercing my eardrums-
Well, I came out in the room, stared at the T.V. in basic disgust, and promptly snapped it off with the remote. I wanted to shove the word "backsplash" down his throat. I know that sounds harsh, but it was just such a selfish, display of someone that is apparently hung up on material things. That gentlemen, needs to go to Pizza Hut and the Pumpkin Patch with Eddie Jett's amazing, brave and precious class. I think he would see back-splashes in a whole new light afterwards.