That was the weekend that was.
Saturday was our 23rd wedding anniversary, as well as a lovely 35 mm camera which arrived a few days ago, Hub gave me some lovely flowers. I know there are those who argue against cut flowers and would rather have potted plants or something else entirely. Fine, that’s great, I however life cut flowers, they live for however long is realistic to expect of them and no one (me) need feel guilty when it has been neglected and is now withered some time later.
Sunday saw 13 become 14.
She had a great day, loved her presents and quite possibly had far too much cake.
All of this brings me nicely to today.
After spending most of the last three weeks at home I was at work today, 14 being under the excellent care of her father. Then I cam home and had a cuppa. Since Tumblr loves to love a meme, today is Mugshot Monday.
Of course no cuppa works without a read.
Here’s a truth, today is better because my daughter’s health is better and her behaviour is better, quite possibly those two are linked. She is now 14 and although developmentally, educationally, she is still pre-2 years in many things there are certainly signs of maturity in some areas of understanding. Some, not all.
It has also been about two years since she has had a seizure.
I am afraid to have written that, just as I hate writing or saying that her behaviour has improved.
I am TERRIFIED of what a seizure might be like should she have another one after all this time. In the past seizures following a long break have been severe, long and lead to many, many more. I have to just keep hoping that somehow something has changed. Or that her dosage is such that it is keeping her seizure free now her rate of growth has slowed.
I know how you feel about the anger. I know how you feel about questioning why this had to happen to your lovely child, or to you.
I don’t subscribe to the idea that I wouldn’t change things. I know there is a HUGE body of special needs parenting that says the opposite. Fine, that’s their business and their opinion, it isn’t mine, if I could make my child definitely seizure free, if I could remove her autism and open her mouth so she had more than just a handful or words. If I could open her mind so she could learn and develop as other children. If I could change things so that now I had another 14 year old with whom I was laying down the law about hair colours and suitable clothes and make-up and going out and when she had to back and all the other things that are part of parenting teens I WOULD DO IT IN A HEARTBEAT.
In a heartbeat.
I can accept where we are because where we are right now is a bit better than where we were this time last year. It wouldn’t take much to know me back to where I was if her behaviour or her health or both deteriorated. Not much at all.
I want you to know that being angry about it is also normal. Or, if others tell you it isn’t, then know, there is at least one other person who has felt exactly the same and who is trying not to dwell on how other 14 year olds are because it shows it gap between where her 14 is and where others are.
At least one other person knows how you feel.
© 2012, Penbleth / L. McG.-E.. All rights reserved.