Saturday, April 9, 2011

Remembering Toby and Forgetting Other Things

April 8, 2011

I’ve been thinking a lot about Toby over the past few days. Of course, I think about him every day but what I think about changes a lot.

Lately I’ve been trying this whole “focus on his life rather than his death” thing that we’ve been trying in the support group. I start by thinking about all of the happy memories of him. Really, all of my memories of him are happy except for the last few.

Sometimes I can’t believe what an easy-going happy baby he was. When we took him to the retreat the people that were there took turns holding him and playing with him. I don’t think he really cried the whole time we were there. He yelped a few times and squirmed when he was hungry, but he was never a bother. We barely knew he was there. It’s weird to think that other than Mom and Ashley, those people spent more time with him than anyone I know. Now they’re having that retreat again this weekend and it makes me feel sad.

Someone said that with this new baby we’ll never want to put her down. But I rarely put Toby down at all. I didn’t want to. If I had him, I was holding him or else we were both lying down and he was lying on my arm and cuddling with me. He loved to cuddle. I would kiss all of his fingers and toes and nuzzle his head and he was so happy. He liked hearing “The Itsy Bitsy Spider” and he liked my hand movements that I put along with the song.

He liked going for walks, too. One day we walked down to check the mail and it was scorching hot outside. If you’ve seen our driveway you know it’s about a quarter mile long and it’s all uphill. Coming back up I was sweating and panting. He was wide awake and just staring at me like I was nuts. He had this look on his face like, “What have you DONE?” he always had this little knowing look on his face, like he really understood what was going on.

There was another time that I had him out in the garden and he got real fussy. Nobody could quiet him down and nothing was making him happy. I brought him upstairs and ran a bath for him and got in with him. As soon as he hit the water he got all peaceful and calm and I let him float around on my hands for awhile. Everyone else was outside so it was really nice being up there, just the two of us.

We all worry about our lives being meaningful and doing good and important things with ourselves but since his life was so short I worry about him being forgotten. One of the main things that I wanted to accomplish with this blog was to talk about my grief and sadness and to try to work through it. I know that it’s made a lot of people mad, but for every person that I seem to piss off I get at least 3 emails from strangers thanking me and telling me that they have felt the same way and enjoy reading what I’m writing. But the other thing that I wanted to do was be a kind of spokesperson for him. That’s why we did the scholarship and why we donated his organs. Just because his life was short doesn’t mean that it wasn’t important and that he should be forgotten. I want it to mean something. Of course, it will always mean something to us.

One thing that I know that I definitely need to stop doing is letting other people affect how I feel. It doesn’t matter what Person A’s religious beliefs are or if Person B thinks I am handling things the wrong way. I mean, in the end does it really matter what other people think? Sometimes I think that I would just like to cut off everyone in my life except for the people I live with and start over. But that wouldn’t actually solve anything. People are always going to have their opinions and think that you’re not doing things the way that you should. I’ve just got to try to learn to deal with that and continue to do things the way that feels right for me.

And in truth, although it might sound as though I am very angry and bitter, and a lot of times I am, really I am just disappointed. I’m really disappointed in people that I counted on and believed in. but is that my fault or theirs? Were my expectations too high? Were they unrealistic? And is it even right to expect people to be there and be supportive? Maybe not. I mean, I count on Pete of course and expect him to be supportive, but how much is too much when it comes to your friends and family? They all have things going on, too, and while we might not think they’re as bad as what we’re going through that doesn’t mean it’s not bad for them.

I had this thought again today when I was thinking about my friend Jody. (She is married to my ex boyfriend.) We are at about the same stages in our pregnancy and she was admitted to the hospital about a week ago. She will be there until the end of her pregnancy. I was there for two days this week and thought I would go insane. So I’m feeling sorry for myself but then I think about Jody and think, well, it could be worse. Why am I complaining? But then I stop and think, wait, just because her situation sounds a little worse doesn’t mean that I can’t feel bad, too. I’m on bedrest, I can’t play with Sam, I can’t go shopping, I’m in constant pain, we’re in constant fear of going into pre-term labor, and now I have this darn-blasted kidney infection. Our “bads” might be different but that doesn’t mean that they aren’t equally bad.

I’ve gotten to the point where I’m so afraid of losing another person, too, that I feel like I’m being run over with a steam engine. I let Melissa go off on my doctor because I didn’t want to complain too much, less he not like me. That’s crazy. I don’t ask for food or drink in the hospital because I’m afraid the nurses might think I am demanding and not like me. That’s equally crazy.

Everyone knows that I can’t really leave the house and that I’m stuck here and not feeling well and that I’d like to see people. Yet I have people saying things like, “I’ll come over and bring the whole family to visit.” (Robbie, I am NOT talking about you. I know you’re going to think that.) I want visitors so badly that I’m afraid to say “no” because I don’t want them to get mad. But then I get resentful that they don’t understand the fact that I just can’t have that many people. To me, it would be obvious. I don’t understand why it isn’t to them. Like, what do they think I am going to do? Have everyone up in my bedroom? Cook for them? Do I really have to explain yet again that my blood pressure is really, really high and that I just can’t take stress right now because a higher one would mean that the placenta could come the rest of the way detached? So I really have to explain again that getting up is limited to the bathroom, the occasional trip downstairs, and to the office computer when I need to stretch? I don’t think I should have to explain these things but I do and then I just feel like I am complaining.

Finally, after bitching to Melissa about this, she told me that I just need to tell people, “Look, I want company, but I just can’t handle many.” She said that people would either get offended or they would understand but either way I couldn’t give in just because I was afraid of hurting their feelings.

But that whole attitude makes me feel resentful. I know it shouldn’t but it does. It’s like I’m not allowed to worry, I’m not allowed to be pessimistic, I’m not allowed to be sad, and I’m not allowed to be sick. Sometimes it feels like people just dismiss me and my feelings and if I try to speak up or whatever they get pissed off and I never see them again. Yet they can say or do whatever they like.

It’s frustrating.

I’m thinking that by the end of this I’m not going to have anyone left. I don’t know how I feel about that sometimes.

Few people met Toby and most people disappeared during his pregnancy. I was bitter and angry about that at the time, but then it made me kind of glad that at least we had those 6 weeks to ourselves. I got to spend time with him every day and really get to know him and didn’t have to share him with many. That might sound selfish, but looking back I’m a little glad it happened that way.

One night Pete was rocking him in the pool room and I was sitting on the couch. I just happened to look over at him and Toby had this huge smile on his face. It seemed to stretch across his entire face. It was probably just gas, but I like to think he was happy. Someone on the SIDS group said that they thought their child had been born premature because he wanted to spend some time with his mommy and daddy before he died. Now that’s a nice thought that I can get behind. I’m glad that we got to spend time with him, too.


Peter said...

It's getting hard for me to remember. i don't have the best memory as you know, but it's also just more difficult sometimes to not see some things that are the worst moments. I do go back to those times I visited him in the nursery just after he was born. The first time I took a camera ad photographed every inch of him so you could see he was okay. You'd sent me because you were getting more and more worried he wasn't due to the birth and being premature. I took some of his feet, his hands, everything perfect, thinking they were for you. I think to, they were for me. The moment I saw him there I new he was fine, I stopped worrying. he was peaceful, and looking around even with that gel they put on new baby's eyes. I tried to let him hold my finger but Toby wasn't into that too much yet. After taking the photos I stood there and talked to him, half quiet, half silent because I was very aware of the two nurses on the other side of the small, L shaped room. I felt the worst was over, that he was here. It was a nice moment, an one I knew I had to savor. He would be brought out to us soon, into the world again from the stately, this time, of the nursery, and he would belong to you as well then, and slowly as he got older, like Sam, he would begin to become other peoples as well. For that moment he was just mine, and I know that's selfish, knew it then, but I wanted it. For those six weeks he became ours and ours alone, I enjoy that as well. But for 6 minutes he was mine, and we talked. Sometimes what makes me upset the most, and it changes on a daily bases, is realizing the promises I made to him during those six minutes were all broken. But they were good while they lasted.

Rebecca said...

I'll say the same thing I said on your blog entry...

I am glad that you had that time with him, too. I remember you bringing back my camera and the video that you had recorded of him and me and the nurse sat there and looked at them over and over. They didn't let me hold him but for a minute after he was born because they whisked him off to NICU so that was really the first time I had seen him. I was so happy that he was okay. Sometimes I think about the fact that when they handed him to me he was crying and the first thing I said to him was, "I promise things will get better." And then they didn't.

Everyone seemed so concerned with getting their opinions in, getting the attention turned back to them, and telling us how wrong we are/were in the way that we do things that sometimes I do feel like Toby is forgotten.

But really, it doesn't matter if family and friends have forgotten about him or didn't act interested in him to begin with. I don't think we could have loved him anymore than we did and that's all that really matters.

Leslie said...

At the Gathering last summer, I remember thinking how you and Pete held Toby all the time. He was hardly ever put down during the day, even to sleep. And he had more costume changes than Celene Dion. Every time I looked at him, he was wearing some different adorable outfit. Thank you for letting me hold him.

In the end, most of us are not remembered by many people, really. But I don't think I will ever forget little Toby, mainly because of how you and Pete doted on him.