After writing about my hysterectomy from last week I thought I needed to update Toby’s blog, too.
I have been thinking about him a lot these past few days and actually crying more than usual. I see other little boys that are a year old and I can’t help but wonder what he would look like and sound like now. I miss him everyday. By now he and Sam would be playing together. Yet, at the same time, Iris wouldn’t be here if Toby hadn’t died and that fact has not escaped me either.
Iris has stopped breathing three times tonight already but I haven’t had to do CPR. Vibrations have been enough to get her going again. People seem surprised when they find out that someone always sits up with her (it’s generally me at night) yet how can you sleep when your baby has seizures and/or stops breathing every night?
I broke down the other day and commented on the chick’s blog that is always driving me crazy. Then I was to chicken to go back and read any comments after that my a bloggy friend gave me a heads up about it. Apparently she and one of her followers will no longer be reading my blog. (Didn’t know that they were to begin with!) This is a great loss, of course, to lose two followers. I mean, I ALMOST qualified for that free toaster!
That got me thinking about why I started the blog in the first place. It wasn’t to get followers or to try and help people. At first, people that I knew honestly wanted to know what I was feeling. Boy, were they sorry! Then, so many bad things kept happening (Dad’s heart attack, my mother-in-law’s death, Mom’s stroke, our two dogs being poisoned, and Pete losing his job all in the same month) that I needed some outlet to deal with it in. My friends certainly didn’t want to hear about it. Too much drama. And most friends I couldn’t talk to anyway. Most of the ones who worked at Foothills just wanted to analyze me and treat me like one of their clients. Others would be compassionate when they talked to me but would then write about me on Facebook, telling others what I thought had been private between us.
I had so much anger at the way that we were being treated and now I know that it’s normal. Almost every parent I have spoken to have talked about how family and friends treated them after the death of their child and how it made the situation worse. Finding out that I wasn’t alone in that helped. It made me feel less angry. I don’t get a lot of comments on this blog, and that’s fine, but I do get random emails and those have helped me so much. Even just a “hey, I understand” can really lighten your load.
Pete has always supported me in this blog. His family and friends might not believe this but there have been MANY times when I have offered to take it down because of the drama that it has caused be he has ALWAYS encouraged me to keep it up and in every single case he has told me that it’s their problem and not mine.
I’ve never set out to attack anyone on this. Well, except maybe for that Stunned By Sids blogger. Everything I have written has been a reaction to something that someone said or did. In the beginning, I couldn’t fathom why people would treat us the way that some of them did but then after meeting more parents I found that it’s a common pattern. It stinks, but I really am considering writing a book about surviving other people.
I have learned many things this year but one of the things that I find most disappointing is that people don’t want to let you grieve the way that you need to. Pete and I have never seemed to do it the right way. In a culture that reveres “strong people” if you show any weakness then you kind of get reprimanded. When Pete’s mom died (just two weeks after Toby) he was immediately supposed to forget his own sadness and grief over the loss of his son and take care of the rest of his family and when he didn’t, he was ostracized in a way that I still can’t wrap my head around. It didn’t matter to anyone that he was feeling suicidal, was under an extreme amount of depression, and was still in a state of shock. He was supposed to put all of that aside because, what? Toby was just a baby and didn’t warrant as much sadness? Not ONE TIME did anyone who was pointing fingers ask him how he was feeling, how we were doing, or even try to show one iota of compassion.
Then we had his “friend” get angry at us because we wanted to talk about Toby. We weren’t grieving the way that he wanted us to, either. We were supposed to be falling at his feet, glad that he had taken the time out of his busy life to come and show us the light-even though he had never lost anyone and wasn’t a parent himself. And how helpful was he? I remember one point in which he stood over me, screaming, while I cowered in the corner of the couch crying while Pete tried to get him to stop. So we didn’t do that right, either.
I don’t know that I would be here if it weren’t for this blog. I have used it so much as an emotional outlet that I have come to depend on it. Sometimes there are entries that nobody reads and that’s okay. Other times, friends will read it and send me a virtual hug or offer me support and that means a lot, too. I DO keep a diary but that’s not enough. Although it might be brief, I need that positive and support and interaction that I find on here.
Whether they want to admit it or not, most people want to see grieving parents smiling, laughing, and shedding the occasional sentimental tear. They want to be able to look at the parents and say, “They’ve had such a rough time but look at how well they’re doing!” That makes them more comfortable. The reality is that we cry a lot, we get angry a lot, we’re confused a whole lot, and we don’t always have it together. We’re often difficult to be around and sometimes we push people away when we don’t really want to. Writing in this has helped me sort through those feelings.