Wednesday, October 13, 2010

How did she get here?

She sat there mouth agape. Looking at her account balance on the screen. $35.00 really? That's it? How could that possibly have happened? She thought 'oh well' and headed off to the store. Her son was out. Husband on the couch and the caregiver was playing with her daughter. She needed the break and the alone time. Still has some credit left and her daughter had to have the scripts today..and they were out of soap. A few more dollars on the card wouldn't matter now.

Walking into the store she steals a glance in the window of herself. Did she brush her hair today? Doesn't look like it. Runs through her day in her mind and realizes it's 7pm and she hasn't eaten today. Who forgets to eat?

Afterwards in the car ready to go back home she just lays back in the chair for a minute. So tired. So broke. Her good friend is in Hawaii right now. She goes every other year. Hawaii....she wonders what it's like. The only vacations she has been on in years is to meet up with other families just like hers. Both times she slept on a mattress on the floor because hotels and car rentals were out of the question. Plane trips with layovers,wheelchairs,meds and tube feeds are quite exhausting but the only break she gets. Doesn't make sense to travel 1800 miles like that to get away. She knows that most would never be able to understand the feeling of home you get by being with people that get it.

She gets ready to start the car and sees her. The little girl walking out of store with her mother. She looks to be about her own daughters age. Talking away...talking. Her eyes start to well as she watches the girl carrying the huge Disney Princess tea set out of the store. Carrying it. All by herself while she skips along next to her mother.

She starts the car and wonders when she'll ever get over it. Will she ever be able to look at another child her daughters age without hurting a hurt that is unimaginable? It will be 4 years since she knew. Since she found out her daughter would never talk. That she would eventually stop walking and eating and have gross developmental delays. Or is it global? So many doctors. Each with their own horrible view of her daughter and her future.

Driving on the highway she wonders why this happens to her every time she is alone. She yearns for alone time. No husbands. No teenagers begging and pouting. No diapers or meds or falls or tremors or constant screaming. Aches for it. Almost every time it comes, when she is alone with her thoughts the pity,heartbreak and tears come back. It always starts with either too many questions, the sight of a little girl or from that time you spend....gathering your thoughts and your plans. It always comes back to Why? How did she get here? WHY CAN'T SHE FIX IT? Why can't she get over it? She's the toughest bitch you know. Isn't she?

She walks in her tiny apartment door and is met with the caregiver handing her her 6 year old. Fresh from the tub and ready for that short cuddle time before the bedtime medicine and wound care ritual starts. She had dried her tears in the car. No one is looking at her funny are they?

Her daughter snuggles into her chest in the new thermal jammies her adopted grandmother bought her last week. She looks up at her mother and cocks her head. Oh no. She knows. She knows her mother is hurting. The little girl looks at her mother and says," I yah yah eww wah uhmah dah?"

She holds her daughter to her chest. Not wanting to put her to bed. Bed means sleep and sleep always means waking up in total panic mode. Did she hear her yet? She looks at the monitor every morning. MOVE she thinks. Cough,roll over, moan. Anything. Her mother walks to her room every...EVERY morning trying to make as much noise as possible on the way. Scared to death that if she isn't at least squirming she is going to touch a cold child. Every morning.

How did she get here? When will she wake up from this? Hoping tonight that she doesn't have that dream where Rett Syndrome was just a dream. Waking to discover the nightmare continues. Every day with every breath.

Sons home. Time to put the smile on.

"How was your day honey?"

6 comments:

The MacDonald Family said...

Oh Terri, that was so painful, but true and beautifully written. You have such a gift. I wish I could reach through the computer and give you a huge hug! I don't think I'll ever "get over it" either.

Erica said...

terri. thats was so beautifully written. and i am you! a tough bitch who cries in the car when I see little girls talking and making choices and picking out clothes and the list goes on. shoot, the girl doesnt have to be DOING anything. I can just see her and the tears come. today I sat in an IEP meeting and looked at Avery's genetic test results (we were changing her eligibility code) and I felt like I was looking at someone else's results-not Avery's. its still so weird and new to me in a way. hasnt been a year yet. but i get it. and I know that doesnt change any of it. but thank you for sharing this. thank you. big hugs.

Ann Marie said...

I feel the same way whenever I am out alone. I'm relieved that I'm not the only one who, for no reason, panics in the middle of the night and the only thing that settles me is making sure Abby is breathing. Hugs to you and your Abby. Thanks for sharing.

Anonymous said...

You are an amazing person and mom....to an amazing little girl!

Anonymous said...

Just remember they are closer to a cure now then 4 years ago. I see it happening in her life time and we are so going to be in trouble. You are a very strong individual with a rare gift. You can always call if you need anything. Love to you and Abby.....Pam

Cathy said...

Big Hugs!
I will never get over it