Tuesday, October 26, 2010
I had a dream
I dreamt last night that Ben elbow crawled, then got up on all fours, then walked like a drunken sailor. Enough to make me happy today :)
Sunday, October 24, 2010
Living in the moment
Live in the moment, live in the moment, live in the moment. That's been my mantra for the past few months. But the moment is excruciating when Ben is having a seizure. When he's looking at me, crying, while his body is seizing. And I can't do anything to help him. It is so hard to live in that moment. It's unbearable. I think I can't bear it, but I do. I have to.
Tuesday, October 19, 2010
Thoughts of the moment
I was just looking through pictures on my computer and came across some pictures we took during Ben’s first 3 months. I would give ANYTHING to go back to that time. I am still filled with grief and despair and devastation when I look at those pictures. I would give almost anything to go back to that time, before we knew that Ben was going to have seizures every day. Before we knew that Ben wouldn’t be crawling at 17 months. Before we knew that we would be crying every day because we couldn’t help our son stop having seizures. Before we had any idea that we would have to worry about whether our son would be able to walk, to talk, to feed himself.
On the flip side, I realized yesterday that we are so lucky that Ben is doing what he’s doing. He laughs. I mean, really belly laughs. He giggles and makes eye contact while he’s giggling. He makes noises and complains and watches his sister run around the room. Sometimes he even gets excited to see me after I’ve been gone for a few hours. He sleeps well (as long as a seizure doesn’t disrupt him). He can touch things. He can reach out and hold his sippy cup or bottle while he’s drinking. He can touch my face. He can put his head down on my shoulder and snuggle up against me to cuddle. He’s generally a happy baby. I realized how lucky we were for Ben to have all these abilities when I met a 4 year old girl yesterday who has quadriplegic cerebral palsy. I have nothing to complain about.
I know that I want to get to full acceptance about Ben. I really do want that. But I also want to keep pushing him to do the most he can possibly do. I haven’t yet found a way to balance those two ways of being with him.
I also know that I want to stop suffering. My suffering about Ben is my choice and I can choose to stop it. It’s directly related to my thoughts and it is my job to choose thoughts that don’t result in pain, but instead in joy – both for me and for my children and husband.
On the flip side, I realized yesterday that we are so lucky that Ben is doing what he’s doing. He laughs. I mean, really belly laughs. He giggles and makes eye contact while he’s giggling. He makes noises and complains and watches his sister run around the room. Sometimes he even gets excited to see me after I’ve been gone for a few hours. He sleeps well (as long as a seizure doesn’t disrupt him). He can touch things. He can reach out and hold his sippy cup or bottle while he’s drinking. He can touch my face. He can put his head down on my shoulder and snuggle up against me to cuddle. He’s generally a happy baby. I realized how lucky we were for Ben to have all these abilities when I met a 4 year old girl yesterday who has quadriplegic cerebral palsy. I have nothing to complain about.
I know that I want to get to full acceptance about Ben. I really do want that. But I also want to keep pushing him to do the most he can possibly do. I haven’t yet found a way to balance those two ways of being with him.
I also know that I want to stop suffering. My suffering about Ben is my choice and I can choose to stop it. It’s directly related to my thoughts and it is my job to choose thoughts that don’t result in pain, but instead in joy – both for me and for my children and husband.
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