I keep thinking that I need to advertise this blog, maybe on facebook, and acquire some followers for it. But I don't write enough, and I'm just not sure enough of what I have to contribute, I guess. Then again, I ran into this very lovely woman recently at the hospital while I was there with my son for his 7th heart surgery. She and I were taking a short break in the cafeteria and ran into each other there, started talking. She has been at the hospital with her son for a very long time, and is still there today. I know because we became facebook friends. I spoke with her briefly about the concept of chronic sorrow, gave her some research about it. I wonder if she has looked it up. Sometimes we get so bogged down with the everyday trappings of life with disabilities that it is hard to step out and seek something to help us better understand our experiences and the array of emotions related to them. After so many years, you simply think you have a handle on things. You start to feel like a pro. But, gosh, what does it mean to be a pro at this? Do we win some award? Do we get bumped up a rank in society? No, we don't. As for me, after 17 years, I feel like I'm just going through the motions.
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One of the parents in my dissertation study said that she just doesn't feel like she cares as much to be involved as she used to. With the passing of time, she said, she has stepped back. That's how I feel, too. Like I'm just a bystander, watching this happen to me, to my son... and now to my daughter. Yes, my daughter. Finally, at age 12 she is beginning to show the effects of this incredibly predictable life we live. We went to a psychiatrist. It seems like it all boils down to her own chronic sorrow. How else should she respond? With the lack of services and supports, even family supports, where else could we be expected to be? Add to this the fact that I have no affordable insurance for her... meaning, she can't get the mental health services that she needs. Instead, I've enrolled her in a Parks and Rec Music Leadership class that is supposed to help young adolescents understand their own power, learn to experience mindfulness, and basically find their way and make a place for themselves in this world. It's the best I can do right now.
But, I swear..I lay in bed at night and question myself relentlessly. So much guilt. And then simultaneously, so much damn RESENTMENT. I know I have just become bitter. Sometimes I just feel the weight of all of this on ME. Sometimes I want to scream for others to stand up and take some responsibility, too. It isn't easy for ANY of us. And in the case of my daughter, I want to remind her that I'm not perfect either. I don't have all the answers. She has to work out some of these things for herself. Then I have to remind myself: SHE IS TWELVE! She doesn't yet have the skills to work these things out without help. She looks to me, I know, to learn how to handle things. So I have to be strong while still letting my emotions show. I fear sometimes that she sees too much bitterness, too much anger... at the system, at the world we live in. So many attributes about myself that I do NOT want her to take on. I don't want her to go into the world angry at it, suspicious of it, intimidated by it... but that's pretty much how I perceive it these days. Gone is the hopefulness of my youth. And because of that, she has no feelings of hope either. It frightens me because at least I HAD it at one time. I know what it is to feel proud, happy, energetic, engaged, curious. I fear she has never learned this, or has already lost it, and in such a prime time in her life. ... *deep sigh* finished for now....
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