September 3, 2011
Dear “Stunned by SIDS,"
This is my second attempt to write a blog entry in response to your blog and the way that it has made me feel. I wasn’t satisfied with the way that the first one came out so I’m going to take another shot at it. Normally, the last thing I would do is criticize the way that another person is doing their grieving-especially one that has been struck by this awful thief called “SIDS.” However, your blog has met me around every corner in the past few weeks and has invaded my safe places and the places that I have come to depend on being stable and understanding. In fact, I have now discovered that your blog has become a part of my grief in a way that I didn’t expect.
You and your blog make me angry. In many ways, I feel violated by your words. I won’t say by your feelings because I’m not always sure what feelings you are trying to convey with your words. But I do know that your words make me angry.
In your “About Me” section
Next, you state that you “do get through SIDS to sunny days with sunshine and music.” Yes, you do find days with “sunshine and music.” But under no circumstances does that mean that you are “cured.” You know what? I laughed the day of my son’s funeral. A nervous teenage girl from the local florist, one of my mom’s students, delivered some flowers to my house after the service in an attempt to make me feel better she said, “This kind of thing happens in my family all the time. It’s just something that you overlook.” As soon as she left we all burst into laughter because there was nothing else to do. Yes, I will “overlook” my dead son. There were days following his death when I didn’t cry. There were days months later when I couldn’t get out bed.
Grief is not a linear process.
You do not “get through” SIDS. SIDS will affect us for the rest of our lives. While we might find different ways of dealing with the pain and the sadness, it will always be a part of it. Someone once said that they like holding onto it because in some ways it’s all they have left of their child. You might “get through” the acute pain, the flashbacks, and even the crying spells but you will always be dealing with SIDS. You’ll find it rearing its ugly head when you least expect it. I am even more aware of it now that I have my “angel baby” because it’s a fear that you can’t shake.
You go on to say that you know that you are “still in the midst of getting "through" this life-altering experience” but that you are “out of the worst of it.” Oh, really? You wrote that three months after the death of your child. You may not have even seen the worst of it yet. And I mean that gently and kindly. I was amazed when the “real” pain, the deep pain hit about six months after my son’s death. It was only then that I realized that for the first six months I was in shock. In many ways, what followed the shock was less acute but worse in its own way. It has now been more than a year and I still can’t claim that I am out of the worst of it. I don’t make any claims anymore. Despite what the psychologists might say, there is no formula for this.
The first time I read your blog the part that struck me the most was when you stated that you started your blog because you ”couldn't find anything documenting the range of emotions that parents feel when left behind on this Earth without the bodily presence of their child.” To that I must say, well, you just didn’t look hard enough. Because there are tons of resources on the stages of grief (not that I necessarily agree with them), SIDS, support groups, message boards, forums, pamphlets, brochures, and even books. If you take a look to the right of my screen you’ll find a selection of blogs dedicated to the grief that parents feel when they lose a child. We are out there. You just have to find us. Or more importantly, you have to WANT to find us.
And then we get to the point that brought us together. That would be where you say that you “didn't want to join the groups.” However, you DID join the groups. You joined the groups and posted the link to your blog. Several times. You didn’t participate in any of our discussions, you didn’t really introduce yourself, and you didn’t try to get to know any of us. What you did, though, was market your blog.
In fact, over the course of the next few weeks I found your blog being marketed by you, your family, and other SIDS organizations that you had sent it to in order to market it. It showed up in my Facebook newsfeed (I ended up deleting the organization that sent it, but not because of that), in my inbox, in replies to messages that I posted in my support group. I did not feel as though you were a parent reaching out to other parents. Instead of trying to find like minded people, you came across as someone who was trying to be a leader to us. So maybe that’s it. It felt less as though you didn’t want to join the groups and more like you wanted to lead one.
I can say that part of me understands this. Perhaps you are the type of person that naturally feels better when you are able to lead others. Sometimes I understand that. My husband is a bit like that. He likes to have something to do. He likes to fix things. And I can understand how groups might not be helpful to you in SOME instances. But you didn’t even give ours a chance. You just signed up, posted your link, and left.
I, myself, have not joined all of the groups. I have only joined one. Well, two really but one is an extension of the other and it’s the same people. I haven’t joined more than that because I only found one that I felt comfortable in and despite the fact that SIDS has overshadowed my life in this past year I don’t want it to consume my life. You might be surprised at some of the groups, though. We don’t always talk about SIDS. Sometimes, we talk about nonsense. Sometimes, just being near other people that have been through the same thing is enough to help heal you, even if you never broach the subject of your children.
I have read through all of your entries. My husband has read through your entries. Others that I know have read through your entries. Most that I have talked to have not understood them. For some, they got downright angry. And when I say that they didn’t understand them, it’s not in the sense that your loss is drastically different and we can’t relate, it’s been that we can’t relate to the way that you are dealing with you r son’s death.
Although you claim that your blog has “honest and raw” emotions, I have yet to see anything remotely honest. Or raw. In fact, there are many times that I have been reading your blog and feel as though I am reading a piece of fiction. A very well-written excerpt from a book about a person who lost a child. A book that has all the right words but has been heavily edited and affected. It’s the only thing that I have read from a fellow SIDS parent that I absolutely can’t relate to. I must say, when my husband first read your blog he questioned that you had even lost a child at all, that’s how little we could relate to it. We don’t really believe that, of course, but there’s a distance and consideration for your words that make them anything but “raw.”
There are things in your blog that I can relate to and I bet if you talked to other SIDS parents you would find that they are not that uncommon. The cutting, for one thing. I did that, too, and I had never done anything like that before. Wanting to get away from everyone and everything.
Instead of encouraging so many people to read your blog I would spend some time exploring others. Underneath all of the polished prose I do believe that you have some sadness and that you might feel alone. Maybe in your trying to get so many readers to come to you, you are actually trying to feel less alone. My advice is to forget about your readers for awhile. Forget about your visitor count (your latest entry was dedicated to how many hits you’ve had on your blog so far) and forget about telling people HOW to read your blog and instead, just listen. You continue to encourage people to reach out to YOU and read YOUR stuff, but instead why don’t you work on reaching out to others. And simply providing a link to your blog isn’t enough.
In one of your latest entries you went so far as to tell people HOW to read your blog. You said that they were reading your newest entries but that they should really start from the beginning. You know, you should be happy you get anyone on there at all. Blogs generally aren’t linear. I once had a person find my non-SIDS blog by typing in the phrase “Elvis’s favorite sandwich.” I was tickled to get a visitor! The numbers don’t matter unless you’re trying to get a book deal or make money off of it (but then, maybe you are because you do have ads on your blog). It doesn’t matter to me if one person or a thousand read what I have written. Maybe my words and my experiences will help someone and maybe they won’t. There are people from time to time that stumble across mine and drop me a line and let me know that they agree or disagree with what I’m saying. And when they agree I’m glad. It helps ME. But I’m not doing this for validation.
In my SIDS group, someone posted the quote “When a baby is born, its mother’s instinct is to protect the baby. When a baby dies, its mother’s instinct is to protect its memory.” And in some ways, the grief and the healing process is part of our children’s memory.
Lastly, your tagline says that you are “helping parents through SIDS.” Why do you feel the need to “help us?” Why do we need your “help?”
Maybe that’s the part that made me angry. For me and many of my “Angel mommy” friends, we’ve had more than enough “help” since losing our children. Many people in our lives have told us what to do, how to feel, what to think, and what we’re doing wrong-all in the name of being “helpful.” In each other, we have managed to find support, encouragement, understanding, and when we ask for it, advice. But we’re all stumbling in the dark here. No one is claiming to be an expert. Who would want that job, really?
I know I’ve been cruel and I’m sorry for that. I’m really not a mean person. In my anger, however, I find a little bit of strength this time. I am deeply sorry about what happened to your son. We are living every parent’s worst nightmare. We belong to a club that nobody wants to be a part of.