beyond.

yep. sometimes it feels like this...

and then you see this.

crossroad

For some reason I find myself depressed on Mother's Day. Not that I think I am not a good mother but it makes me wonder whether I did what I could for Maddux this year. I do not leave Cade out of the equation but lets face it, I could leave him in the house for a week and he could take care of himself. So today I decided to get Cade to take a picture of how I feel. Workout clothes still on, hair a mess and in my favorite spot. Might I add he is quite the photographer! So here I am, wondering where to take Maddux next. Where can I use my money for the most good while targeting where she struggles the most. I always find a way so I do not worry too much, but I do spend a few days feeling heavy while I figure out her next path. I have listened and made all the decisions to get her where she is and God did not lead me wrong in 9 years so I trust He will pull thru again.

a box and a notebook.

what I did for 4 years is right here in these pictures. Everything Maddux knew and lost in those 4 years is here. Yes, I said 4 years. She knew it, she lost it.

We taught it again.

She lost it.

Her favorite letters~ P and X

Her favorite people on felt so I could use them on a board to help her not forget her family.

Baby Faces- Oh that book was so loved!

Good Night Moon- given to me my my sister from her girls and read so much that she could tell me the story herself. Those were the only words sometimes she would say in a day. They were complete sentences, whole phrases~ memorized.

Then there were the notebooks. The hard part. The record of seizures. The times she would stare, drool, turn bright red, not breathe, turn blue.....

And yes the number at the top right corner are the number of seizures and how many minutes they lasted that week. But on the bright side that was later in her seizure life. Earlier it was the total in a day.

She slept.

She seized.

She slept.

She seized.

No wonder she did not know anything.

The box makes me smile the notebooks make me sad.

Somber posts... yes but it is things like this that show me how much she has accomplished. Where she has been. One day I will figure out youtube and post videos of her back then. That is more real but I fear putting her out there.

Within those notebooks are what she has accomplished, also. Every word mumbled. Every sound made. If she had a fever, I wrote it down. What she ate is all in there. I could probably hand this notebook to a DAN doctor and they could find a pattern and tell me how to treat her better. But no one can tell me I was not a good mom. I do question it from time to time. I am the one who takes her to the doctor, gets her to eat food that is not her favorite. Takes her to and from therapy she does not fee like going to that day. And heaven forbid I teach her how to brush her hair. Not her favorite thing.

So for now I am not her favorite. She loves her daddy. But I am making her a wife, a mom and a person who can live like any one else one day. So for that I will take the back seat.

Our Gray

I have met my daughter for the first time, again.

Not many people can understand my writing unless you have been there or seen it in someone else's life, but M's issues interfere with us getting to know the real "her".

We feel like on a random basis we meet her... pieces of her.
Never a full picture. Just pieces.
Her pieces are cute.
Her pieces are funny.
Her pieces are so heart felt and loving in her own way.

I nickname her Amelia Bedelia. She is very black and white. No abstract.
No jokes.
No funny sayings.
No "implied" humor
Just flat out black or white.

Well now after 12 weeks of Brain Balance and 7 years of intense therapy... I am meeting her gray.
It is witty.
It is funny.
It is sometimes scary and not filtered

But it is her Gray

It may not be in a rainbow, but we think it should be!