Sean

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This is Sean. Sean is 18 but with that toothy grin of his he can pass as 14. Sean is three years younger than Jason and six years younger than me.

Jason and Sean have two totally different personalities.

Sean’s day consists of being carried out of bed by my mother or father and once he gets downstairs he’ll roll on the floor for a few minutes playing with balloons before he is picked up once again and placed in his chair for breakfast.

Once he’s done eating, he gets bathed and changed into his outfit of the day or his (ootd) for internet sake. Then he goes into his dungeon aka our basement. Now before anyone thinks that we put this kid in a basement so we don’t have to deal with him for the day let me just tell you that his dungeon is also a disco.

Sean can’t learn like Jason can. He can’t read and can’t be taught anything logical. Sean’s nickname might as well be Sensory Seany, because his favorite toy is a flashlight. His man cave consists of Christmas lights, strobe lights, lasers and anything else you would find in the rave light section at Spencer’s.

To continue with the alliteration theme, we can also called him Sweet Tooth Seany, because there is no pastry this child won’t eat. I fed him half a pan of brownies once at a family party and he still wanted more. I had to cut the kid off before he went into a sugar coma.

One night my boyfriend was eating chocolate chip cookies at the kitchen table and my dad was standing by the chair lift waiting for Sean to crawl there so he can whisk him up to bed. Instead, Sean crawled over to my boyfriend and started tugging on his arm trying to eat the cookie right out of his hand.

Sean is laid-back where as Jason is apprehensive. Sean always has a smile on his face except for when I’m smothering him with kisses. Then he rolls his eyes.

He is also very mischievous. One day my parents got a phone call from school saying that Sean pulled the fire-alarm. He was wheeling down the hallway, pulled it, and the whole parade came while the school was evacuated. My father,  being a 911 dispatcher for the Chicago Fire Department, got wind of this and when asked by his co-workers if he was upset that Sean did this, my father laughed his head off and said, “Hell no! I’m proud of him!” It was hilarious. I am also proud.

Sean got a PSP (Playstation Portable) because whenever Jason caught him playing his, he would yell at Sean and take it away. Sean is a lover not a fighter, so he would just give Jason a look like he was rude and crawl off to watch TV.

Sean doesn’t communicate as much as Jason but the improvement he’s show over the years has been phenomenal. He picked his nose once, (something he’s never done) and we all started applauding him. He’ll crawl to the fridge when he’s hungry or start tugging on your arm if you’re eating in front of him.  It’s the little things that make Sean who he is.

In December of 2013 both of my brothers were diagnosed after 21 years of being undiagnosed. 100,000 doctors later we discovered that they are the only ones in the United States that are missing the Genetic Mutation BCAP 31. Six Pairs of that gene are missing. There are six boys in France that have this, the oldest being 22 (Jason is 21) and Jason seems to not be as involved as him. It happens to be in the arm of a protein and carbohydrate gene. There is no treatment yet because it’s just been discovered but we’ve done the best we can for the both of them.

People ask me, “What’s it like having two disabled brothers?” I always respond, “What’s it like having two normal siblings?” It’s my life. I am who I am because of these two and I hate to see the kind of person I would be without them. If you stare at them I will stare right back at you. If you make fun of them, I will invade your personal space. I live to keep them happy and make them proud of me.

 

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4 thoughts on “Sean

  1. We are all so proud of you , a better sister they could not have and better brothers you could not have, you are all made for each other …We love you all so very much

    1. Thank you very much 🙂 I feel that God gives special children to special people. That is our case and I couldn’t be happier. I love you and Uncle Jack very much!

  2. HI, My name is Michelle and I am from Toronto, Canada. My son was just diagnosed with BCAP31, (just this week)and I searched the internet about it and found you. HIs sister is unaffected, Your post gave me hope for my son, since the literature it seems like there are not many kids out there with BCAP31 gene. My son is not 4 yet, and he has many of the issues that you describe. He is delayed in pretty much anything. And, He seems trapped into a body that can’t do anything, and can’t hear Can’t talk etc. But he is a VERY smiley guy who laughs at Gags, loves lights, baseball, etc. Would love to connect in anyway.
    Michelle Rooplal,

    1. Michelle this is the start of a wonderful friendship! My family and I couldn’t be happier that you found me in your research. My mother would love to talk with you so first I’m gonna add you as a Facebook friend (I’m Dana Marie) and then we should definitely exchange email addresses!

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