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.
3 comments:
tears. you are one amazing mama. what you wouldn't do for her.....she will grow up to be a wonderful, self sufficient woman, because YOU were her mother.
Love you.
Becky E.
Wow, Jaime! You are inspiration to all Moms! Especially those of us who take so much for granted. I was reading something the other day that had a different spin on one of my favorite scriptures. 1 Samuel 1:27 "For this child I prayed" but the emphasis was on THIS. I had never really thought about it that way. Our exact children, with all their quirks, issues, dispositions, personalities, all of it is exactly what and who we prayed for, and exactly how and with whom God answered our prayers! How amazing! And yes, God made you Maddux's Mom because He knows you can handle her and help Him mold her into the beautiful woman, wife, and wonderful Mom she will become... all because she has YOU as an example to follow. Thanks for sharing and for your transparency. Hugs to you!
A "good" mom? Jaime,"good" simply isn't the right word...you are the BEST kind of mom; the kind of mom who will go to any lengths to help her child, the kind of mom who is not only thinking of the present but the future as well, the kind of mom who is filled with love and never, ever gives up hope.
You amaze and inspire me. Thank you for sharing this.
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