I came across the following journal writing from December 2008. I have been wanting to start a blog about our life with our daughter and thought this would be a good start.
What makes my life story any different than the average wife and mom with two kids, a house, a dog? That little voice inside my head tells me "not much", but the voice in my heart knows differently.
I first started thinking about my life story when I was asked by my son to proof read his college entrance essay. He chose to write about how it was like growing up with a sister with special needs. In reading his essay, I learned some things that he had been thinking but had never expressed and it made me proud, happy and sad all at the same time. He is only 18 years old and his life has been shaped by experiences, as is everyone's, and it makes up part of his story. It made me realize that if his life was already so different than that of his buddies, mine is too!
Most days I don't feel different than any other mom out there. You love your kids, you do whatever you can for them, care and nurture them and always try to do your best. Then there are those days where I feel all alone, like I am the only one who experieces these feelings of loss, of sadness, of frustration and yes, of anger. I feel ashamed of these feelings and I usually have a self talk that helps them pass but they creep up every once in awhile to remind me of MY story, my life and why it is mine.
One of those days, is today. It is Sunday, a day to sleep in a bit, read the paper, enjoy a quiet cup of coffee. I go in to check on Lindsay and she is lying in a puddle of urine and refuses to get up. She is so strong and stubborn that trying to get her out of bed is a feat in itself. I know down deep she is embarrassed at what has happened and is unable to verbalize her feelings, at the same time, I feel myself getting more frustrated at the thought that she won't help herself. No reasoning, trying to change the subject or anything seems to work. She finally gets up but refuses to take her wet clothes off and shower and sits on the floor in protest. The one side of my brain is telling me to leave her alone, close the door and ignore her behavior. The other side is telling me, she is getting the floor wet, the smell, the mess, etc. That right thing to do and the other right thing to do, in my mind! By this time, Jerry is up and trying to help. She continues to fight, getting more stubborn and aggressive with each suggestion. I find myself going into the other room and taking a big breathe to calm down, knowing that all of us are getting frustrated. We realize that it is time to close the door and let her be. Jer and I hug each other and say "what has gotten into her"? We know that we won't ever know what has triggered her acting this way. Something set her mind in motion; Taylor not being home, being tired, having to go to "homework", being away from home over the weekend, etc. So many things to cause her meltdown and so many reasons why we will never understand her inner frustration.
Later, I go to check on her and she is lying on the floor with her head on her pile of papers and purses, with her arms crossed over her chest and she is sleeping. I look at our little-big girl and shake my head, at her ability to fight for her right to do as she pleases without using words. She awakens and comes to me, almost as though nothing has happened and now willing to take a shower and change clothes. She knows I am upset and uses her sweet manner to help me refocus. She is good at that! I have come away knowing that it was a battle of wills and she won. Yes, I hate to see the stain , the smell, the mess, the inconvenience but I know in the end and in the whole scheme of things, it was just a learning experience and it will be okay.
I realize that although each of us have different experiences with our children, that all parents have those moments of frustration, of battles of will and it doesn't matter if your child is disabled or not, we all have been there. I know it is ok to feel my emotions, that we do our best and that sometimes the best isn't what we have done. All we can do is learn from it and let it go, so that the next time it happens we can do better.
