Purpose of this blog

When I first lost Toby, I spent a lot of time on the internet, reading about other people's experiences with childloss, researching SIDS, and trying to find an outlet for the feelings I had. At that time, there were very few SIDS blogs. The ones I found only had a few entries and then just seemed to stop, mid-grief. It was about 6 months into my grief before I discovered some of the online communities that would later be helpful.

As I read about other people's experiences, I was struck by the stark dissimilarities between theirs and my own. People talked about how helpful others had been, how grateful they were for family and friends, and how they were placing their faith in God and his decision. I did not resonate with these feelings.

Eventually, I would find other parents who were Jewish, Pagan, Native American, and even atheists but in the beginning it really felt like the support I was getting was all Christian based.  While I welcomed ANY support, I found no comfort in words like "He's with God now" or "the Lord knows what he is doing." (I should add that I live in the buckle of the Bible belt so that's kind of what is said around here anyway.) I KNEW that those words should offer me some form of comfort, but they didn't. I wanted to talk to others about MY beliefs concerning why he died and where he was, but I had no outlet for that.

The support part was also troubling to me. Before Toby was conceived, we were very sociable people. We had big parties at our house, complete with bands, and we were constantly meeting people for movies and meals. We got out a lot. Toby's pregnancy was very difficult, however, and it was hard to do anything during that time. The friends I had were ones who mostly were the types that did stuff together, not the ones who would just come over and hang out. Most everyone dropped off during his pregnancy and only a couple of my friends even met him at all once he was born.

Within hours of Toby's death, we had loads of people over at the house, helping out. They cooked for us, cleaned, ran errands, and generally did things that we couldn't think of. After a couple of weeks, however, they gradually dropped off. Many people did not come to the funeral for various reasons and it would be months before I heard from them again. My best friend of more than 20 years, for instance, didn't come, nor did my sister. Others sent me messages and texts and stuff but didn't come around. I understood that they had lives, too, but I was incredibly lonely and living way out in the country, also very isolated.

We would go weeks, and sometimes months, without seeing any friends at all. This was a far cry from those whose experiences I was reading about who, even a year later, still had people dropping in on them to see if they needed anything.

Two weeks after Toby died, my mother-in-law died. Since my husband's family live in England, it was difficult to get to the funeral. A friend of ours offered to pay for me and our son's plane ticket, but my in-laws did not want us to come-only my husband. At such a sensitive time, he did not want to be separated from us and so he made the decision not to attend the funeral. (To be fair, I booked his ticket and he was all the way to the car when he decided to turn around and come home.) This lead to a lot of resentment on his side and very unkind words were passed on to us, from friends and family. This would continue on for more than a year.

The anger, sadness, loneliness, and grief I felt were almost unbearable at times. Aside from dealing with the death of my son, I was also dealing with a barrage of almost unfathomable hatefulness. I received messages telling me that I had killed my son and a variety of other things. I started cutting myself. I thought about suicide a lot.

I needed some way to deal with those emotions.

The blog offered me an outlet to pour those feelings out. I figured that at the least it would help my friends and family understand where I was coming from. At the most, it might reach someone else who was having similar experiences and perhaps allow us to bond and commiserate with one another.

As the time went on, my blog managed to make a lot of my friends mad. We grieving people are a sensitive lot and it doesn't take much to send us over the edge. On the other hand, I also learned that there are a lot of insensitive twits out there, too. Writing about the crazy things that people said and did, and later reading other people's experiences with similar things, was helpful in dealing with the feelings that arose from those encounters.

I had people drop out of my life because they thought we had too much drama. (I also learned that many people expect us grieving peeps to be strong, silent types who deal with our grief privately, less we make others feel uncomfortable.) I had others disappear because they had to put forth too much work in our relationship. (That was true for about a year. I was a crappy friend.) And then I had others who just disappeared altogether, blocking me and deleting me without ever giving me a reason.

I also had amazing people do incredibly nice things for us. Sometimes they were friends whom I had known for awhile.Other times they were virtual strangers. I enjoyed writing about them, too.

I tried making this blog a place to come for SIDS information as well. In the beginning, I was dead set against following all the rules, terrified that one of my other kids would suffer the same fate. As that fear subsided, and I did more research, I turned the other way-realizing that no study or list could replace the instincts that I had. Nobody knows their children like their mothers.

From time to time, I encountered dummies who thought that SIDS didn't really exist or I discovered research that was misleading. I wrote about these things as well.

At the end of the day, though, my blog was called "Life After SIDS" and that's really what it was-a description of how we were dealing with our son's death and how we coped with the loss. I have come to realize that everything that has happened since, happy and sad, is still a part of that life. Toby's death will always be an influence on our lives. It has taught us to deal with things in a unique way. It has taken away our naiviete that everything will be okay and stolen our innocence when it comes to believing that everything works out for the best.

SIDS is a unique type of child loss because it has no reason. SIDS is a syndrome whose only symptom is death. You can't catch it or stop it or prevent it. Not yet, anyway. For those of us who lost our babies to it, we have no answers. We have a lot of suspicion surrounding us and guilt that we MUST have done something wrong. But until science does its job, we are all left without answers. Writing about the feelings surrounding this helped keep me sane. I might have lost people along the way because of it, but self-preservation was stronger. We did what we could and that's all we could do.

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