my sister

my younger sister is 33 yrs old and she's mentally retarded. i don't know if that's pc, am i supposed to say developmentally disabled? but anyways, in the 80's i don't think there were pc & un-pc ways to say things so i always said mentally retarded. my parents would always tell me not to say that. my dad would say "she is delayed". so since i had a slow sister, i figured i'd get a break and when it came time to have my own kids, they'd be perfect and healthy and normal. but i guess lightening can strike twice. i remember my sister not walking until she was 4, not talking until way after 4, riding the special education yellow schoolbus, not having friends (the friends she had were also special needs & i found a lot of them kind of weird/creepy), i remember her telling us that she'd eat lunch alone at school, i remember her getting made fun of when we were little. i remember this mean boy on our block calling her retard. i remember being embarrassed of her because my friends and classmates thought she was weird. oh god, it freaks me out so badly because i don't want that happening to noah. i just want him to be normal. i don't want his big sister being embarrassed of him. maybe i'm being punished for being mean to my sister too when i was little. i'd be mad at my parents because they'd always treat her like she was fragile, she could do no wrong. with me, they'd yell at me all the time.

anyways, i pray everyday that noah comes out of this normal. i'll find moms whose kids come out normal and it gives me hope & i'll actually feel ok for a few hours. but then i'll read about kids who come out BAD. and then my heart sinks again. i don't want him to be in the "bad" category. i don't know what i will do if he is.

i talk about myself a lot saying "what will i do?" or "i'm miserable". i mean, it's my son's life. i'm selfish, yes i am. i mean, when i first got my son's diagnosis, my first thought was, omg my life is ruined. my life is over.
i mean, it's my son's life though. but if his life is over & ruined, then so is mine because all i have to live for are my kids.

anyways, back to the moms i talk to that i meet online. in the first couple of months, i was too scared to read cp blogs or blogs where the kids don't turn out completely fine. i would only read blogs where the babies came out completely recovered because that's the category i want to be in. i just can't accept that my baby will be "different". i remember reading ellen's lovethatmax blog and i immediately closed it because i didn't want to be in that category.

then as weeks went by, i realized i wasn't going to be in that category because my son did start showing signs. they aren't severe yet or anything but they are definitely concerning, and i'm terrified. i am so so so terrified beyond belief.

anyways, now i read all blogs regardless of the child's outcome. sometimes i even read awful awful blogs, i don't know why. maybe to remind myself that other people may have it worse? i don't know. but the other day i read a blog about a girl who had a great life and then in some diving accident ended up completely paralyzed and couldn't do anything for herself anymore. she ended up starving herself to death because she didn't want to live anymore. it really freaked me out badly. i wish i never read that blog. then the other day i read another blog, i don't know how i come across these- i think i just keep clicking on comments that writers leave on other blogs and somehow i end up on these random blogs. does that make any sense? anyways, this blog was awful - it was about a mom who lost one of her babies to cancer. omg i wish i never read that blog either. i was reading the beginning of it, which maybe started in like 2008 or something? and things were bad, her daughter was dying. and i read a few posts and it was too depressing. so then i clicked on her 2012 posts hoping she was doing better now but she isn't. i wanted a happy ending. i wanted to see her doing ok now but she isn't. i mean, maybe she was doing a little better but she still thought about her baby girl nonstop. ugh it depressed the hell outta me.

so then i sat around thinking, what could be worse than my situation? i thought of john walsh, the guy who does "america's most wanted". now THAT is worse than my situation. his child was murdered. so i googled his story. why do i do this? maybe misery loves company so i just feel better hearing about other people's nightmare stories? anyways, john walsh's son, adam walsh, was 6 yrs old at sears. his mom walked to an aisle to shop for vases so she let adam watch a bunch of older boys playing video games. when she came back to get him, he was gone. the security guard told her that he kicked out the older boys for being too loud and crazy. so adam probably followed along and went outside. no one knows exactly what happened but his head was found 2 weeks later by some fisherman. i think in the late 90's or something, they finally found out who killed him. anyways, my point is, THAT is worse. a child being kidnapped/killed/assaulted? omg i definitely couldn't cope with that.

sometimes, ok this sounds mean, but i'll spot a random stranger, like a really overweight, gross, messy person walking by. and i'll think to myself, "would i rather be him/her? or would i rather have my own life?" this is how bad i think my life is. i compare myself to random people like that and i seriously wonder about the answer. would i rather be myself with a brain injured baby OR would i rather be a gross person who doesn't have a brain-injured baby? i am crazy.