breathe

it's rain-snowing and it's march and i'm done with it. which is great, since i have so much control over the weather.

i spoke with an old friend today, who is in a dark place. she called me crying from her closet. i've been there. she has a kid who's struggling. i get that. she doesn't know what to do- she feels the out-of-controlness of life- and it's a way bigger deal than the weather.

last year, when zoe was 9 life grew dark in our house. she'd always struggled with learning, and sensory issues and with reading social cues, but suddenly this little girl who'd been very happy, relatively flexible, and easy going, became rigid and fixed and incredibly anxious. she began to decompensate and regress over the littlest things.
and life became all about walking on eggshells, just waiting for something to set her off. we developed avoidant behaviors. NEVER vacuum if zoe is home. don't turn on the mixer or the coffee bean grinder. i remember at one point feeling the absurdity of it all- but would still live in fear of these things happening at random in public. because if there was a vacuum cleaner on at the movie theater- beware! she would cover her ears and panic. this isn't so bad when you have a 4 year old, or even if you have a 6 year old, who looks like a four year old, but when you have a nine year old, and now 2 other little kids- it's, embarrassing, stressful, humiliating and basically something to be avoided at all costs.

some of the things were hard in their unpredictability.

me: "honey, daddy and i are going out for dinner tonight."
z: "but why didn't you tell me you were going out?"
me: "i am telling you, right now"
z: " but why didn't you tell me before!"
me: what???

some of the things were hard because of their predictability.
this one was a regular around our house when our au pair would get ready to go out with her friends.
z: "why didn't i see her change her shirt?"
me: "you never see her change? why would you see her change?"
try to logic out of that one!

and this would spiral down and down with her sobbing and angry, and i'm guessing, almost as confused as i was. and i was confused, baffled actually. who ate my sweet kid? who took zoe and replaced her with crazy?

there can be an incredible degree of hopelessness, isolation, fear and guilt that come with having a child with special needs. there is also a lot of hope and joy and amazement and perspective. but in those dark days- the negatives won. we were both out of control. perhaps my worst moment was grabbing her by the arms and shouting, "why are you so crazy!!"
can you imagine what she must have been thinking? "woman lets talk about crazy- you're 38! i'm only 9! and i have an actual diagnosis!" can you imagine her sense of abandonment? what a lesson in how to say you're sorry to your kid. she forgave me, still trying to forgive myself.

for some reason, and from what i've read about kids with NVLD, this age, 9-10ish is kind of the perfect storm. almost all of the things that are hard for them increase in frequency or level. academics become tougher. peers less forgiving and peer relationships more complicated. physical issues or motor planning become expected or routine (in kindergarden not everyone can zip there coat, in 4th grade you stick out like a sore thumb). meanwhile, your kid's becoming self aware, and that is probably the hardest part. the velveteen rabbit moments. becoming real. it's one thing to worry about kids being mean to your kid, or to see kids teasing when your kid doesn't get it. it's another thing to have your child cry in your lap about how they have no friends and why can't they just be normal. for us, for zoe, the storm came in third grade.

so about a year ago, one month after i'd started a new job (excellent timing) i began to get called from her school everyday.

"zoe's having a really hard time, can you come get her?"

me: "well, i'm kind of seeing patients now. what's going on?"

"well your daughter is so overwhelmed that she's hiding under her desk."

me: "ok, i get it. i'll be right there."

after one week of this, mike and i realized that life right now needed to change for us and for our kids. zoe was suffering. how could i spend all day with other peoples suffering, and not with my sweet child? so after 26 year of education, three years of residency, two years of fellowship and three years as medical school faculty, I jumped off the merry-go-round. i'm not saying that this choice was the only one, or that this choice is for everyone. simply that for me and for our family, this choice was essential. and in april 2009, i began to breathe.