Sunday, January 31, 2016

186 minutes

Emma didn't sleep last night. She slept all afternoon until 9:30 pm tonight. In between getting Noah ready for bed, making sure clothes are laid out, getting myself showered, my hair washedand fucking dried ( I loathe drying and then smoothing out my hair-- it is a damn process, let me tell you.), and then fixing a little late supper for Emma, getting her in the shower, helping her condition and rinse her hair, help her adjust the water temperature, help her put her towel around her, lotion her dry face, give her a few kisses, pick up dog poop... twice, well, in between doing all of that (which is what 5 out of 7 nights are like for us, by the way!), I spent 186 minutes total working on a 4 page letter in regards to a meeting I'd like to have at school about Emma's Individualized Education Plan. This is IN ADDITION to the mandatory end of year Review meeting we will have.

Why do I do this? Because my daughter is important to me. Her education is a priority. And accommodations are a RIGHT, not a privilege. In order for her to get the best education she can, accommodations are necessary. I fight for her every year to get what she needs.

Why do I wait until we are in the middle of chaos in the evening to start on this? Pfffft. Seriously? I'll tell you something. Emma slept and Noah played on his computer for a while this afternoon. I have MOUNTAINS of shit to do. I rarely sit down. If I am not at work, I am working at home. You know what I did while they were quiet? I sat on my lovely sofa. I watched episodes of New Girl I'd not seen. It was wonderful. And in the darkness of the evening, into the night, simply put, words pour out of me. My scattered, foggy brain becomes organized, if just for a few hours. The words play in my mind, shoot down my arms, rip out of my fingertips, and speed across the keyboard. I read them as they whiz across my screen, and I AM CONTENT. I like words. A Lot.

I do this because my son goes to school, is a chatty kid, absorbs everything like a sponge, does his work-- he does pretty great overall. Emma goes, and she is instantly overwhelmed. She has some meltdowns, she complains, she is fatigued. She comes homes and sleeps. And sleeps. Sometimes she sleeps until the next morning. If she DOES wake up, it is about 9 or 10 at night, and I don't get to go to sleep when I would like to. Because she is my child, and I need to take care of her. I don't sleep well anymore. Gone are the nights where she slept like a log all night long. Now I am up at all hours, if not for the dang dog, then because I know she is awake-- I can FEEL her awakeness in the house. Our nights are always too short, the days too short, and we are incredibly tired.

It was the seizures making her tired for so long. Now, the seizures are NOT gone with the medication she's on -- just reduced. And the medication makes her tired. I imagine we will be upping her sodium soon to see if that helps... or switching the medication again. I am fearful of all these medicines. The first one made her weep all day and lash out in anger at me. I was sad for her. I am afraid of what these medicines may do to her body.

I know she is now able to focus longer during the day though and think more clearly. Those are good things.

I better go kiss her goodnight and cross my fingers that she goes back to sleep. I need sleep, too.

Monday, January 18, 2016

i am alive

The hardwood beneath her feet crumbled, metaphorically speaking, underneath her canine urine-soaked socked feet. Her house torn apart from Christmas still and on-going remodeling. Nothing was where it belonged. Chaos ensued. In her home and in her mind. Even in her car. The mountains of clean laundry, never put away. The kids' rooms were death traps made of Legos,dollies, and electronic devices piled high. Two phones bought in two weeks. Useless. Nothing worked the way it was supposed to. Stacks of forms-- she'd misplaced most of them under the laundry. Too many things to do, too many places to drive, appointments, stores to go to, clubs and classes-- it all took its toll. Exhaustion consumed her. Her choices in life ate away at her.

She broke.

This is depression. She wasn't sad. She was overwhelmed, anxious, irritable, hopeless and hopeful simultaneously. The clouds in her mind-- she knew nothing, could see nothing. She was blind and fumbling.

More driving, more places to go. Then, after the children were dropped off, she drove away, the sunset in her rear view mirror. The sky before her seemed to open up, time did perhaps stand still. The air smelled of Spring, just for a moment. A long ago voice spoke of a long ago memory.

A wave of gratitude washed over her.

These thoughts came to her:

There are people who wish for LESS than what I have.

My, aren't I fortunate to HAVE a phone and the ability to get another one when this one fails me?

My children are so blessed to have so many clothes to choose from.

I have a washing machine and a dryer.

We have plumbing and running water, a place to bathe and relieve ourselves.

We have warm blankets and plenty of food.

I am alive.

I am alive.

I am alive.

#depression #gratitude

Sunday, January 17, 2016

Sleep. I need it.

In the early morning hours, she wakes up much earlier before her alarm. Her bladder is screaming. God, she is annoyed. Day after day, this means the new puppy thinks this is wake up time. It's not. She has a ways to go before the Little Einsteins theme song blasts on the nightstand,letting her know to GET UP NOW-- there's seizure medicine to give at this ungodly hour. While you're up, go pee. Seek out dog shit odor and clean it up while muttering profanity under your breath . Chastise the dog. Wash your hands. Step in puddle of dog urine. Hiss vile words of loathing at dog. Clean it up. Wash your hands. Get a gulp of cold milk. Pee again. Lie down. Proceed to get out of bed and yell at dog for various stolen contraband (you hear Everything ), illegal chewing incidents, and also Disturbing the Peace (as there IS a noise ordinance -- Hellooo?) Fall asleep, but not more than a half hour at most (if you're lucky), bolt upright to the Little Einsteins rapping about their little rocket ship, and REPEAT.

Saturday, January 16, 2016

well, hmmm, seems like you're a bully too

My two cents:

Those bullying meme I see reposted about every two days on Facebook. You know the ones-- they read something like, 'Kids these days are wusses. They need to be taught how to stick up for themselves. All this bully awareness crap and ribbons and campaigns... we are raising a generation of weak kids... Yada Yada Yada...,' you know -- THOSE.

Well, that is a broad idea, a generalized way of thinking, I have to say. What about my daughter, who sometimes can't verbalize what happens to her at school? What about my friend's daughter who is NEVER able to verbalize her school days to her mom? My other friend's son who believes with all his beautiful heart that life is just like the cartoons he loves to watch everyday? What about my son, who I have not raised to be a fighter because we don't advocate violence in our house?

When I read those memes, I am reading yet another form of bullying. Those people are calling my disabled child and my son 'sissies, ' in so many words. My disabled child who believes the world is her red carpet and glitter rains for her every where she goes. My kind-hearted little boy who says Hello to the butterflies on our walks and cries at sad scenes in movies.

So, thank you very much, I'll stand with those who aim to squash bullying. In fact, I and my fierce momma friends will lead the way.

#bullying #disability #autism #momlife #parent