no more than a hiccup

**

i sit on the floor of brooke’s room

her head is cradled in my lap – her long, lean body sandwiched between my outstretched legs

i look at her upside down, searching her face helplessly

i desperately hope i’m not hurting her

but she keeps pressing my hands harder, harder, then harder still into the sides of her head

she is shaking

i impulsively wipe a tear as it slowly drips down her cheek

she yells

panicked

“NO!”

wiping the tear took my hand from her ear

she grabs it and swiftly replaces it to its station

“YOU WOULD HOLD MY EARS!” she yells

the tension in her voice is palpable

i press my legs around hers

“sorry, baby. i’ll hold them now. don’t worry, i’ve got you little one”

i hold her body in mine

it’s all i have

to protect her from the demons

**

katie stands on her sister’s bed and peers behind the headboard

she shakes her head as she calls out to us in a sing-song

“nope, she’s not here!”

she is trying to help her sister find the latest stuffed animal to have been swallowed whole by our house

katie is so eager to help

her selflessness nearly kills me

‘don’t worry, brooke, we’ll find periwinkle!’ she says

so sweet, so upbeat

god, i love that child something fierce

there could not be a better sister

for all her foibles

(and yes, she has foibles)

she is a wonder

i don’t want to hurt her

i don’t want her to carry the weight on her shoulders

ever

i don’t want her to know that getting her out of the room is the one thing that can ease her sister’s distress

but i’ve got to separate them

she hiccups again

and hell breaks loose

a hiccup – something that should be so small

hell, the word’s secondary definition is ‘a minor difficulty, setback or interruption’ as in, ‘ no worries, it was just a hiccup’

yet not to brooke, whose entire sensory system is under siege

she jams her knuckles in to the backs of my hands, trying to force more pressure onto her ears

she is hurting my hands

i wince

but i don’t care

**

“we’re ok babe,” i say, “it’s ok”

i say it to myself. i know better than to say it aloud

she hates, the “it’s ok.”

for years, it was what i said

without knowing

YEARS

now it’s a silent mantra

it’s as much for me as it would have been for her anyway

it always was

she needs me calm

so calm it is

i stuff the fear and the sadness and the rage

it’s all i can give her

all i can do

**

katie hiccups again

brooke kicks against my legs

her whole body tensing against the attack

she lets out an involuntary shriek

and presses my hands harder into her head

**

luau is getting ready to go run an errand

he’s got to go pick up the car from the shop

“hey, katie”

i’m trying to sound upbeat

it rings false

i sound like an overly enthusiastic host on a kids’ variety show

katie’s on her belly on the carpet now, searching for periwinkle between brooke’s mattress and the trundle-bed below

her solicitousness is almost more than i can bear

“sweetie, why don’t you get dressed and go with daddy?”

she cranes her neck to look at me

her nose is scrunched in pre-teen disdain

“to the car dealership? ewwww”

“it’ll be fun,” i say

she must know i’m full of crap

but i keep trying

brooke is breathing hard, she looks as though she’s just run a marathon

“you’ve been saying you’ve wanted some alone time with daddy! you can – um, be alone in the car with him!”

god, i sound ridiculous

luau comes running in, having heard the latest scream

“you guys ok?”

i will him to understand

to see the desperation behind my casual words

“honey, i was just telling katie how much fun it would be for you two to go pick up the car together!”

he looks at brooke

he looks at me

he nudges katie into her room

“c’mon, kiddo, come with me! it’ll be fun!”

i mouth a silent and grateful ‘thank you’

**

after they are gone, i carry brooke into my room

she’s exhausted

and so am i

i let her turn on the tv

we settle in to watch together

diego is saving a lemur, or a tree frog, or something

i can’t manage to care

she lays across me, her head nuzzled into my neck, an arm across my shoulder

finally, calm has come

the storm has passed

**

hiccups

nothing more than god damned hiccups

i want to scream for my girl

i want to shake a fist at the sky and ask how on earth any of this makes any sense

i don’t

i look down at my baby

i stroke her hair

i wrap both my arms around her and squeeze

she says one word

‘love’

‘yes, baby,’ i say in return

‘love’

and silently i add

‘we’re ok’

26 thoughts on “no more than a hiccup

  1. I had my tissues with me this time. This was so touching on so many levels – between you and Brooke, you and Katie, you and your husband and Katie and Brooke. My 8 yr old tries so hard to understand – one day he’ll be complaining because his brother is making his “annoying noises”, the next he’ll be saving the day at the supermarket during a tantrum when I’m ready to throw in the towel. I expect so much of my older guy, but sometimes it’s easier to remove him from the situation, as you did. It’s never easy, is it?
    Alysia

  2. These moments are the worst the helpless moments, the feeling that there is nothing we can do to help the moment. I have been finding myself having to stop saying its ok to my little one, she now screams it out everytime she is having a meltdown and it breaks my heart. I so wish there were a magic potion to help our kiddos make their way around their triggers. Hugs to you Jess

  3. Going back to the One Wish…this is what I would wish about. Being able to stop, or at least help ease, the horrible anxiety and fear in these moments. It’s these moments like what you described that break me.

  4. Brooke summed it up though when you able to provide calmness for her (which you did, by the way). …love!

    Love you all,
    Mom

  5. You ok? Usually after holding it together for the duration of the “episode”, i go to pieces out of sight somewhere…

    But you did good Jess…you did good. Katie and Luau too.

  6. I had to make a comment because my 3 year old son is doing the same thing. He takes my hands and puts them over his ears and pushes my hands hard to his ears. He has a 7 month old sister who is very much a screamer. He now pinches me when she screams and puts my hands over his ears. Even though he is pinching, I know it could be much worse. I’m actually very proud the way he has adapted to her and her to him. She seems to really understand if her brother is having a hard time, she needs to quiet down. She has been in tune with this since birth. She is literally the only kid that he has seemed to connect with. He shows emotion to her and no one else. We also recently bought him and ipad and he will take her hand and guide it to show her his games or his pecs. I think the relationship between siblings is amazing especially ones with special needs and ones that don’t have special needs. Wish your family the best.

  7. Sigh. Sitting there helplessly is so hard…but sometimes all you can do is just be there. And you were there, all of you, each doing your part to ease the pain. Love.

  8. Oh sweetie, if I could take that pain away from you and Brooke, no that it would be gone in a second. As Aidan asked me for the thousandth time this morning, “Is the sun going to come out today mommy?”, only another mom who has a sensory child would get why….cause thunderstorms are the worst. When its cloudy the fear of thunderstorms is heart stopping for Aidan.
    xo S~

  9. Sometimes, your body is what they need the most- that physical contact grounding them. It tethers them- and you. Drains, too. Brooke has you to ground her- I hope that writing this helped ground you…

    I hope that this is “just a hiccup” in her gradual, oh so gradual, acclimitization.

  10. I just wanted to say I’ve been there, and I’m sorry… You always handle these times so gracefully, and are able to provide the exact support she needs. She’s a lucky girl (and again, that sister, amazing…)

  11. Jess- A sorrow and hope story

    1997? 8? Daily phone calls from the public school the 7/8 year old son was enrolled in. Outbursts, screaming, rolling on the floor, biting, throwing things. No one understood the triggers; no one knew what to do, “oh, we can’t keep him with the “normal” children.” Day after day after day. Mom would go to school, younger son on hip and older son would clutch at her abdomen, sobbing. And mom would cry too and say, “It’ll be ok”….Finally, one day as we all hovered around him, he gasped out, the pencils, the sound…..

    The sound of pencils on paper was driving him crazy. Switch to erasable pens. Outbursts did not end but diminished. He stayed in school.

    I can still remember driving home, sitting in my car and crying. If the sound of lead on paper drove you to dysfunction, how could you survive in this world?

    Fast forward to July 2010. Son is discussing with dad Swedish band they both like. Son is describing the deep bass sounds, which it seems he can hear the variations in, and how he enjoys them. Father is remarking on how amazing it is son can hear variations in sound, since dad can only hear one bass line. Son says that he has always been able to hear things that other people can’t hear, and that it has always had an effect on him. Like when he was little and used to go crazy over the sound of “graphite” on paper. Mom finally fully tunes in- you remember? What was it like? What did you feel? ((Physically ill, with chills) what was the trigger? ( the initial sound itself and then the anxiety, anticipation and perseveration on the sound) How did you stop (learned to anticipate and ignore, and it became less of an issue.)

    Mom is stunned. She cannot believe they are even having this conversation, not one she could have dreamed of all those years ago. Son looks at mom and says “yeah, I didn’t handle it too well back then, did I?”

    Didn’t handle it too well? Excuse me? He threw chairs, he shrieked to the heavens. He kicked and bit people who came near him. The district was going to throw him out.

    It will be ok, Jess. I can’t promise, but I have hope and faith that someday your daughter will describe to you what she felt and end with, I didn’t handle it too well, did I? And you will know that you all handled it just fine.

    • thank you, d. thank you, thank you, thank you for sharing this wonderful story. the gifts – sometimes wrapped in a heap of crap, yes. but always, somewhere – always a gift.

  12. Oh Jess…I am so so sorry you and Brooke had to go through that. But how beautiful that she knows that you will do whatever you can to take any pain away.
    “Love” proves that

  13. Another day…moment of just trying to get through it. My son is almost 4 and he constantly pushes his hands into his ears. I am still trying to learn what exactly is bothering him. Is it sounds, vibrations, feeling of being overwhelemed, frustrated because he is non verbal and he can’t say…hey turn that T.V. down or no I want juice not milk. I just keep asking hoping he will tell me one day and I keep trying to just get through…

  14. to me, this is one of the more painful things: all of the different ways spectrum issues can hurt a person. it’s not just the sensory issues and various discomforts. but someone trying to be nice…even that can be unpleasant at times. it’s an unfair thing, the way good intentions can be hurtful sometimes. i think conveying this to people not associated with spectrum issues, it’s incredibly difficult, so i love your description here. it hurts reading it, but it’s a window onto a difficult, subtle thing.

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