Yesterday morning I was feeling sorry for myself. I heard that my nephew, who is 6 weeks old, is sleeping through the night. I'm happy for my sister-in-law. I really am. I don't know why that made me cry. Both my children were quite difficult as infants. I am still, more than 2 years after Ben's birth, extremely sleep-deprived. In tears, I said to Aaron, why didn't I get that? Why didn't I get the experience of having an easy baby? Why is it so hard for me?
He said, simply, Why didn't you get a child that died one month after birth? Why weren't you born in Darfur? Why haven't you lost a sibling or parent in a horrible accident? It goes both ways, you know.
He's right. If I'm going to complain about my fate in life, I have to consider that it could have been worse. It can always be better or worse. It is what it is. My challenge is to accept my fate and be grateful for what I have. People have told me to focus on gratitude, that it would help me. But it never quite sunk in as it did yesterday morning.
That is the best gift he could have given me.
Friday, July 22, 2011
Wednesday, July 20, 2011
Tuesday, July 19, 2011
Anger anyone?
I didn't grow up with a strong belief in God. I've been looking for a way to foster that belief ever since I was in my 20s. Unsuccessfully, it turns out. I can't seem to wrap my head around anything the bible says. I've talked to priests of various traditions. I've questioned the Mormons that come to my door - maybe they know something I don't, you never know. (They don't). I've talked to a counselor who's an ordained minister. He actually made the most sense and took me the closest to the idea of a God.
Recently, of course, my search has intensified. I think it would give me some peace. So on Sunday I went to a Buddhist Insight Meditation Center in Redwood City. The Sunday talk was about how people tend to avoid unpleasant situations, or pain, and seek out pleasant situations, or pleasure. The buddhist teacher urged us to consider our reactions to pain and pleasure. How do we handle an unpleasant or a pleasant experience? How we react to the pain or the pleasure is important to note, he said, because it can give you insight into yourself and your state of well-being (or not-so-well-being).
At the end of the talk, he opened it up to questions. People started talking about various unpleasant situations in their lives. For example, being around family at Thanksgiving. They talked about how difficult this could be for them. They were chuckling at each other - everyone knows what that's like, right? I just wanted to scream, YOU F&%$*ING ASSHOLES. What about the pain of watching your own child suffer? Having to watch him have multiple seizures a day, sometimes clawing at you with terror in his eyes because he knows it's coming and there's absolutely nothing you can do about? Are you all still chuckling?
I am still so angry. Sometimes it comes out at other people because I think they have such an easy life, compared to mine. I know that's not fair. Or at least part of me knows it's not fair.
Recently, of course, my search has intensified. I think it would give me some peace. So on Sunday I went to a Buddhist Insight Meditation Center in Redwood City. The Sunday talk was about how people tend to avoid unpleasant situations, or pain, and seek out pleasant situations, or pleasure. The buddhist teacher urged us to consider our reactions to pain and pleasure. How do we handle an unpleasant or a pleasant experience? How we react to the pain or the pleasure is important to note, he said, because it can give you insight into yourself and your state of well-being (or not-so-well-being).
At the end of the talk, he opened it up to questions. People started talking about various unpleasant situations in their lives. For example, being around family at Thanksgiving. They talked about how difficult this could be for them. They were chuckling at each other - everyone knows what that's like, right? I just wanted to scream, YOU F&%$*ING ASSHOLES. What about the pain of watching your own child suffer? Having to watch him have multiple seizures a day, sometimes clawing at you with terror in his eyes because he knows it's coming and there's absolutely nothing you can do about? Are you all still chuckling?
I am still so angry. Sometimes it comes out at other people because I think they have such an easy life, compared to mine. I know that's not fair. Or at least part of me knows it's not fair.
Thursday, July 14, 2011
A surge in seizures
We have decided to go ahead with the surgery to implant the VNS in Ben. It is scheduled for August 19th. It was a tough decision to come to, but given how the seizures are impacting Ben's life, and the possible benefits, we think it is a good decision.
However, August 19th seems too long to wait for another potential intervention. Ben's seizures have returned full-force. He's having 7-10 seizures a day again. So, in the meantime, we are trying the last drug available to him. I'd been holding out on this drug - partly because of its potential fatal side effects (always very scary, however low the odds), and partly because it was a hope I was reserving for bad times. Those bad times are here, and I'm willing to use that last hope now. I really, really hope it helps him. We started yesterday, and only time will tell...
However, August 19th seems too long to wait for another potential intervention. Ben's seizures have returned full-force. He's having 7-10 seizures a day again. So, in the meantime, we are trying the last drug available to him. I'd been holding out on this drug - partly because of its potential fatal side effects (always very scary, however low the odds), and partly because it was a hope I was reserving for bad times. Those bad times are here, and I'm willing to use that last hope now. I really, really hope it helps him. We started yesterday, and only time will tell...
Monday, July 11, 2011
The Zen in BenBenZen
I heard a lyric in a song today - "ha ha ha, bless your soul, you really think you're in control". That made me think. As many of you who know me would guess... well, there's an inkling of a tendency there for me... Oh, let's face it, I like to be in control! I like to think that I have a way of determining how things will go in my life. My first realization that I will have very little control of my life came in the form of a tiny little baby girl, who has told me what my life was going to be like from the moment she entered it! And she still does. I will record her bossing me and Aaron around and post it on here - just to give you an idea of the force we are dealing with!! She knows what she wants and has the energy to go after it - even if it takes all day ;) Hopefully we will learn how to channel that so that she does get everything she wants in life :)
Ben has been the catalyst for a different kind of realization that I am not in control. I have no control over how fast he will develop. When will he crawl? When will he say the words, "mama"? We have no idea. The therapists and doctors give me exercises to do with him and pills to give him. In the hopes that, someday, he WILL crawl and say the words I so desperately want to hear - "mama".
When you go for a hike, there is often a well-trodden trail. It may go through dense brush or through open fields, but the trail is always obvious. These are the trails most people follow. We see each other on these trails and greet each other in passing, always assuming that the other person is doing exactly what we are doing - walking outdoors, getting exercise, soaking in nature.
They say that Ben will progress, only slower than most other kids. He's on one of those trails, but just farther behind. He will catch up eventually. He's just going at his own pace.
I don't buy that analogy anymore. Ben is not on any of those clearly marked, well-used trails. He veered off early onto a little-known and unmarked trail. This trail is covered with brush that he and I have to clear away. I am behind him, desperately trying to clear the brush so that he can proceed without extra work on his part. Pushing my way down this trail I get confused. But Ben doesn't. He seems to know where he's going and is confused that I don't know. He turns around to look at me with these eyes that tell me that he knows exactly what's going on. Why don't I know?
I think this paradidm shift is extremely important for a number of reasons. It gives me the awareness to allow for the fact that Ben is trying to communicate in ways that I'd never thought of. It also gives me space to learn about his way of communication, his way of seeing the world.
Is this Zen? Is this acceptance of Ben? I've been ashamed of my behavior for the past two years. I've been ashamed that I'm having this much trouble accepting Ben EXACTLY as he is. But for a mother, it's a tough line to straddle. I want to push him to be his best, I want to expect the most from him. But I have to do it on HIS trail. Not on my familiar trail.
Ben has been the catalyst for a different kind of realization that I am not in control. I have no control over how fast he will develop. When will he crawl? When will he say the words, "mama"? We have no idea. The therapists and doctors give me exercises to do with him and pills to give him. In the hopes that, someday, he WILL crawl and say the words I so desperately want to hear - "mama".
When you go for a hike, there is often a well-trodden trail. It may go through dense brush or through open fields, but the trail is always obvious. These are the trails most people follow. We see each other on these trails and greet each other in passing, always assuming that the other person is doing exactly what we are doing - walking outdoors, getting exercise, soaking in nature.
They say that Ben will progress, only slower than most other kids. He's on one of those trails, but just farther behind. He will catch up eventually. He's just going at his own pace.
I don't buy that analogy anymore. Ben is not on any of those clearly marked, well-used trails. He veered off early onto a little-known and unmarked trail. This trail is covered with brush that he and I have to clear away. I am behind him, desperately trying to clear the brush so that he can proceed without extra work on his part. Pushing my way down this trail I get confused. But Ben doesn't. He seems to know where he's going and is confused that I don't know. He turns around to look at me with these eyes that tell me that he knows exactly what's going on. Why don't I know?
I think this paradidm shift is extremely important for a number of reasons. It gives me the awareness to allow for the fact that Ben is trying to communicate in ways that I'd never thought of. It also gives me space to learn about his way of communication, his way of seeing the world.
Is this Zen? Is this acceptance of Ben? I've been ashamed of my behavior for the past two years. I've been ashamed that I'm having this much trouble accepting Ben EXACTLY as he is. But for a mother, it's a tough line to straddle. I want to push him to be his best, I want to expect the most from him. But I have to do it on HIS trail. Not on my familiar trail.
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