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I was in a slightly bleak mood when I wrote the first reply. I need to amend it. Tashmere Send a noteboard - 13/05/2010 12:59:09 AM

Duty has the final say though. There are too many people that depend on me. My parents are very old now and I need to be there to take care of them. I used to feel that I needed to stick life out because I would be the one that ended up taking care of Maurice,my mentally retarded brother, when my parents died. However he died last November. But right before he died my daughter gave birth to my first grandson. Johnny is making a huge difference in my will to live. Another person that just radiates joy and love. He is way better than any drugs could be. But he also has Goldenhar Syndrome. I kind of feel like my brother was waiting for someone to pass the torch to before he died. Maurice was a big part of why I stuck around. I needed to stay to take care of him. Now I need to stay to take care of my parents and be there for Johnny. Life might be kind of hard for him and I want him to have another safe haven where he is treated like any other child and loved.



Well, I think what bugs me about the "try harder" or the "you're not doing it right" thing is that it brings me back here, where I'm missing some concrete, tangible thing that would make me happy, some simple thing that I am just too stupid or too dumb or too materialistic or too lazy to get. Or maybe I just don't want to, deep down. Except, I'm not in the kind of therapy that's examining my subconscious. We're working with what I think and feel and say and do consciously, and making me aware of the patterns of thought I fall into, and trying to make me at least know when I am doing this to myself, and at the very least say, Look, I am _______________ again. Let's have ice cream instead! Ice cream is yummy! etc.

If it's buried in my subconscious, I need a shovel. :[

I hope you won't mind my asking, but how (there are no tactful ways to ask) but Goldenhar is about facial disfigurement, right? Not, um, an inability to sense or hear or touch?

I wish you and your family strength for what's coming, and much joy.


I think I came off a bit like a martyr when I said that I needed to be there for Johnny. In reality I don't think he is going to really need me. I am the one that needed him and I didn't even know it. I was steadily withdrawing from the world and hiding in my little introvert cave interacting less and less with those I didn't have to.

You know how when you get a wound and when it heals there is scar tissue that isn't quite as sensitive as the skin originally was? And how when your heart gets hurt it leaves scars even when it heals? I had this wall of scar tissue around my heart that kept me from being hurt as badly. I think that it had gotten fairly thick. I was not excited when I heard that Laura was pregnant. She hadn't been either. She hadn't realized she was pregnant until it was too late to end it or she probably would have. I didn't know if I had it in me to open up to another person. I figured that I would be the best grandma that I could be as my mother had done for me when I had kids but I expected to do it more out of duty and that love would come along with sacrificing blah, blah, blah.

What actually happened was that when I actually saw his birth and held him...within hours he had completely melted through all that scar tissue and I had no defense. This child has power. He is changing everybody in his life. This child is so loved and cherished by so many people. When Maurice died, Johnny's presence somehow comforted the whole family.

He continues to smooth the sharp edges of life for us. He makes whoever is holding him feel loved and wonderful and funny. We don't see the lopsidedness of his head when we look at him. We just see those beautiful eyes and that smile and we feel good about ourselves. (I want to be able to do that for other people like he does. Can it really be as simple as he makes it seem?)

I am not making the point that I wanted to make directly. What I want to tell you is to hang in there. Sometimes the things that are going to help you have not been created yet.

Prozac was not around when I first had my kids. It hadn't been invented but it did come and it made a huge difference.

And sometimes the people that are going to help you just haven't come into your life yet. And they may come when you least expect it or in a form that you were not looking for. Johnny is a baby. Logic says that there isn't much he can contribute when all he does is eat, drink, poop, smile and cry. But his smile, his infectious laugh and gentle touch have an incredibly soothing and healing effect far beyond what you would expect.

Maybe there is someone out there that you haven't met yet that will come and help heal you. Someone that is going to see all the good that is in you and show it to you somehow. And you will soothe and heal them.

I am just trying to say don't lose hope. Things can get better.
This message last edited by Tashmere on 13/05/2010 at 02:02:00 AM
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