I didnt come to this site to have people feel sorry for me or for people to pity me or for people to rate or give me bling or gifts because of my homelife. So please dont misrepresent this blog. Im simply venting about my life. Nothing more.
Not many people understand me at all. And its not because I'm a difficult person..its because of what has been given to me ... my two severely handicapped children and my learning disabled 14 yr old with an attitude problem.
My youngest angel is 11. She has a neuromuscular disorder called Rett Syndrome. She was diagnosed @ age 2 with it..followed by a seizure disorder the following year.She started out as a normal healthy child..only to have that taken away by this horrible dibilitating disorder. She still wears diapers 24/7, drinks from a baby bottle, walks but with a very unsteady gait and does sometimes use her wheelchair. She cannot play with toys, nor can she tell me what hurts her when she isnt feeling well..because she is non verbal. She cannot feed herself, bathe herself, dress herself..anything herself. She relies on me for everything but the air that she breathes. What she CAN DO is love me unconditionally, look at me with such passion..and put a smile on my face. I love listening to her giggle..especially when i'm singing to her. ( i get that alot when i sing for some reason) lol
My son is 12 and was also diagnosed at age 2. He started saying words like 'mama , dada,baba..etc etc'but then suddenly stopped. He started making weird movements with his hands and just was not the same boy. He would scream when I would hug him. He stopped eating all of his favorite foods..to be replaced with only a few select foods. We tried all of those expensive 'miracle cures' where the dr would charge you for every breath that he took..only to be misled ..AND BROKE ..and heartbroken in the end. He is also non verbal. He doesnt play with toys. he'd rather hold a string and watch it wiggle. He is bout 5 inches taller than me. One of these days he's going to knock me down. He steals food when I'm not looking..which is why i am a prisoner inmy own kitchen...he also doesnt talk but at least he can point if something is hurting him..whereas my daughter cant.
What he DOES do is.. puzzles really great ..he can type his name on the computer..or the alphabet backwards... he can go to you tube on his own and type in pinocchio. he loves to be tickled and will always ask for more. He loves to swing on a swing.
My 14 yr old 'normal'daughter is just that ..'normal'.. altho she does have a learning disability that took us years to diagnose (its a visual perception problem). I feel sorry for her because of her siblingss.Now she's told me "maybe I shouldnt have kids when i grow up mommy" -thats heartbreaking. The other side of her is the side that looks at me with daggers ..looks like she's planning my death at times. lol
We own a business and my husband is NEVER home. I work with him for 35 hours a week (I work practically for free) I leave for work right after the bus picks my kids up..and come home right before they get dropped off. I have to switch from my daytime job to my night time job.. MOTHER. I havnt slept a full night in 14 yrs. I've changed diapers for the last 14 yrs. I cherish my online time. I have no friends. I dont have time for any. So any friends I meet online are nice.
Just had to vent. thanks for listening.
