This is a really cool idea. The winner is selected by random, but I had to write about Emmett.
I have an 11 year old son with a severe brain injury since birth. He doesn’t sit, stand, walk, talk, eat or drink. We lost our lawsuit to against the doctors and nurses because they LIED to cover their ass. That’s really sad and pathetic. Money will not change his brain injury, in fact I’d trade every dollar and ‘thing’ I have to hear him talk and say dad or hi. Money will help ease the stresses of living with Emmett. I would like to quit my job (web design/programming) and work full time developing a communication aid that uses brain waves. I know he’s “in there” wanting to talk. If I could get a simple yes or no from him that would be awesome. It would help us deduce where he is feeling pain, where he would like to go, what he would like to see… Having the ability to communicate with his mom, dad, brother, sister, teachers, etc… would be the best gift I could give him.
My wife and I rarely get a full nights sleep; one of us does “early duty” and the other does “overnight duty.” Our alarm clock is him crying. This wakeup cry can come at 2am, 3am, 4am, etc… In the rare event that he does sleep past 7am I have a sinking feeling that he might’ve died overnight so I go and check to make sure he’s still breathing. The day to day grind is insanely tough and never consistent. Everyday I have to prepare myself for a mental and physical marathon. From making his food, administering meds, lifting him, doing therapy, staying positive, not crying, emergency trips to the hospital, cleaning vomit, doctor visits, giving him baths, playing with him, watching him have seizures and generally hoping someday it’ll get easier. I recognize that someday my wife and I will not have the physical and mental strength to take care of him and we’ll have to give up the fight and hope that a respite home will love him as we do. I hope this is many, many years away.
I would like to add that Emmett is a beautiful child. Even though he can’t talk to me, he has taught me so much about the fragility and resilience that is life! For some reason we possess and instinct to live. So much so Emmett entered this world without a heart beat and not breathing. For some reason he toughed it out and joined our family. I love him so much. Sometimes when I’m mesmerized by the amazing things his brother and sister say or do I get saddened thinking about the “life that could of been.” I can’t dwell on these non-productive thoughts for too long and shift focus to his beautiful smile, finding things to make him happy and enjoying his life.
Thanks for reading… I’ve never considered myself good at writing (thanks engrish teachers). However, writing this stuff out is good therapy for me.