When were you most scared? Why? How did you respond? How do you wish you would have responded (Author: Mary Churchill)
him: honey? can you come in here for a minute?
me: sure. what's up?
him: just watch this. what's going on with her eyes? (said quietly and pointed to our daughter as they were playing a game of sorry sliders one night back in february 2012.)
me: huh. that's odd. baby... why are you holding your forehead like that? are you ok?
her: me? oh yeah momma i'm fine. my head just hurts a little.
her eyes then roll back in her head and flicker side to side, and she squints very hard and holds her forehead again. it all happens so fast.
me: no that. you just did it again. are you in any pain? you have a headache?
her: oh you mean my eye thing? no! i do this all the time now!
us: YOU DO????
her: yep.
me: what happens if you don't?
her: well, if i don't, it feels like bees are going to sting my eyes, so my brain just tells me to do this with my eyes, and then by the end of the day, my forehead is really tired. oh and you need to come down to school for a meeting this week, because i got in trouble again for giving dirty looks to my friends.
him: call the pediatrician. tomorrow.
first stop, pediatrician. and questions fired at me so fast, i felt like i should just be ready to relinquish my rights as a parent. i had failed. i had not seen the signs. i had not noticed. i had not recognized the triggers. i had not seen this all developing. i had not known my child was smarter than smart. i broke down. i feared i had not done enough. i feared i was not present enough. i feared i was not focused enough. i feared i didn't spend enough time and i feared this was all my fault.
did she ever throat clear.?yes. did she every blink repetitively? yes. did she ever make recurring noises? yes. did she ever do anything else repetitively with her hands or feet? yes. all things YES. she was showing signs of tourettes, but we needed to be evaluated by a neurologist for a 2nd opinion.
all the same questions, with a physical consult and battery of visual exams, because her eyes were also bothering her. the neuro agreed. tourettes, and he also stated she was gifted, but thought we should meet with a psychologist for official diagnosis.
it was officially determined kennedy has tourette's syndrome and is a gifted and talented child. no she does not run around the playground yelling shit and fuck. but let me tell you, if you do not respect her space and give it to her when she asks for? her tics just might develop into that sort! (a little joke there)
i have learned, through education - she is fine. WE are fine. there is nothing to fear. we've got this. it's all about education and adjusting. yep. we were judged. judged internally even. i learnt that the judgement came by lack of knowledge and not understanding even the meaning of the word tourette's. there are people in this world that like to find blame for things. i actually had someone say to me... "it's not tourette's - she's just mimicking you."
hmmm. yep. pretty sure i don't clear my throat after every word, in silence, when i sleep, roll my eyes as i'm trying to speak like a stutter, scrunch my brow at the same time, and then flick them quickly side to side when i get nervous. yep. pretty sure i don't do that. i'd be exhausted with that much movement. oh and let's not forget the fun little finger stretches that she does now often before she picks things up or holds things that almost borders on OCD as tourette's is wont to do - oh yeah, and then there's the cute little rocking Rain Man thing she's just recently started doing with new stress in the family - yeah, that's a fun one that keeps you from being able to snuggle and be physically affectionate with her in the evenings. yeah, all those things i DO NOT DO... because I DO NOT HAVE TOURETTE'S...MY KID DOES. phew.
i don't fear tourette's. not in the least. i educate myself about it. i fear the people that mess with my child that choose not educate THEMselves about tourette's. because they will get the information - unsolicited. from this momma. fear me.
Most scared? I live in a daily state of fear that comes and goes due to my anxiety disorder.
ReplyDeleteMy fear is always of something happening to the people I love. If my mom doesn't respond to my morning text within a reasonable amount of time, I wonder if she's fallen or worse.
If Chris is unexpectedly late coming home, I worry that he's been in an accident. I fear my 87 year old grandmother, who still lives alone in her own home, is going to have something happen to her and no one will know for days.
These are the things I am scared of. And I know when I started being scared.
New Years Eve. Ringing in 1996 at the bowling alley with my family and our friends. Midnight had already past and we had had our midnight kisses. My dad goes up to the lane to bowl, he releases his ball, turns around and collapses. He has had a major heart attack and never recovers. We are all there, we all see it happen and we are helpless. Ambulance comes, takes him away. We follow in our cars. He never wakes up. He is brain dead. I only see him once in the hospital, that same night. Hooked up to a hundred wires and tubes.
He had heart surgery 2 months prior, but I thought he was recovering.
My mom honors his wishes that he had told her sometime before, that if he goes into a coma, he wants to be kept alive for 7 days, because that's usually when people wake up in the movies. Crazy...crazy...crazy. He was brain dead. He wasn't waking up. But my mom had no choice but to respect his wishes. I knew he was gone that night so I never went back to the hospital...neither did my sister.
I fear for my loved ones health and well being and I fear the helplessness I feel every time something happens.