This life we lead

I have been meaning to write a blog for awhile now, maybe a year. Ican't remember. I can hardly remember what I had for breakfast. Sometimes I try to start one, sometimes I feel as tho I could share myexperiences and maybe help someone out there feel as tho the world isn't falling in on them, that there is someone else out there that gets it. One of the most "engaging" topics in the news has been this Botox treatment off label. I am very fortunate that not one doctor ever felt that those injections would benefit my son. I can't understand why celebreties and socialites and just rich women inject botchulism into their bloodstreams for the sake of eradicating lines. I am grateful I am not a starlet that needs to look perfect for my livelihood. I can't imagine having to make the decision to do botox treatments for my child. I am not judging anyone that has done it because I am giving my son stimulants in order to get his good brain cells to work totheir greatest capacity. Much like we adults infuse our bodies with caffeine and other things we know aren't good for us just to function at our best ability. I am scared about the long term effects of the medication. I am scared about the long term effects of the Keppra(anticonvulsants) he is on. We do our best as parents to do what we feel will help our kids live to their fullest potential. There is substantial "off label" use of botox for kids with severe spasticity. I truly hope that pharmaceutical companies are looking into alternative treatments and can do the necessary research needed to ensure therapeutic and SAFE practices and standards. I had to laugh recently, but then started seriously thinking about what my son's primary care physician said offhandedly to me just last week. She said "you should really write a book about all this". My son was 7 in April. He has currently and by history Cerebral Palsy, Epilepsy, Autism, Sensory Processing Disorder, Auditory Processing Disorder, Visual Processing Disorder, Coordination Disorder, Apraxia, Dispraxia, Low tone (That isn 't a diagnosis is it?) He has a phonological processing disorder, Attention Deficit Disorder(Inattentive type) Impulse Control issues, and the list can go on and on. The skinny on it is that the area of the brain leading to the hypothalamus is severely damaged and that is the gateway of all your sensory processing. Sight, sound, touch, smell, taste are all affected. But he doesn't speak well so he can't explain much. The thing is that he walks, and can self feed. By all accounts, his MRI is consistent with someone in a wheelchair, feeding tube, respirator~Profoundly physically and mentally disabled. His Neurologist calls him "Neurologically Devastated". He can sight read. He is not on a respirator, feeding tube, or in a wheelchair. He doesn't even need a walker. He actually "looks" normal upon first sight. What I have come to realize, no matter what we all go thru, to what degree we have to experience this... IT IS HARD for everyone. We all face many challenges every day that most people won't experience in a lifetime. We all have our coping mechanisms whether it is with religion, a sense of responsibility, a "calling" , whatever. On the particularlyhard days, my mechanisms include a nice bottle of Pinot Grigio, shameless watching of General Hospital on DVR(maybe even twice) and even a good cry. My husband bought me a pair of wireless headphones for my birthday. They plug into our TV receiver and I can completelytune out the chaos surrounding me. It is a beautiful thing. I have pity parties, get mad at the world, take things out on every one in my immediate family. I am human. We are all human. We will make it thru this. A better person, a stronger person? I don't know the answer to that. Maybe, maybe not. We all change. We don't experience life the way our friends do.(At least the ones we knew before disability) We don't sweat the small stuff, don't fret in the typical crap that consume most of our friends. Life has taught me that ther eare more important things in life. So, I suppose this experience has made me a tad wiser, more compassionate for ALL others with exceptionalities, yet a tad more jaded. But that comes with the territory I suppose.