Friday, January 27, 2012

Support that hurts

I was an online 'support' group. As with  many generic women's sites, there weren't as many posts from women with deceased infants as women with miscarriages. If 10-20% of all pregnancies end in miscarriage, there are A LOT of women that experienced miscarriages, whereas an infant death is a small percent of 1 in a thousand live births... not counting all pregnancies lost. So what did the site do? Go ultraefficient and lump the loss of a child under the age of one (after all an infant isn't an actual person yet, right?) with miscarriages at 6 weeks when most women haven't thought to test yet. It isn't to say that they aren't all valid losses, it just isn't appropriate to group them together. So many women with miscarriages get upset when women compare it with the loss of a loved dog, but go up to a woman who has buried her child to tell her she knows 'exactly' how she feels... A pregnancy at any point is not an animal, but it is really about as obscene if you have experienced both a miscarriage and a child's loss. And this is what these woman were doing.

A poor woman with a stillbirth posted looking for a group that 'got' her and all the 1st trimester women were insulted that she thought her situation was different or might even think it was more hurtful. I am just sort of flabbergasted at some of the nasty things women posted to her and me 'a loss is a loss' 'they all hurt equally', even the moderator. She can speak for herself, but I know that for me it isn't the same. Nobody would give up a child they know for the promise of one that they didn't.

I have thought and prayed a lot about it. Perhaps to an individual it can hurt as much, after all, they don't have my frame of reference. But it really makes it sort of a one up you board rather than support. The idea is, after all, to help everyone and not acknowledging differencs prevents the ability to support, prevents the ability to recover. After all, can you really say that a woman who scrapped up for IVF, only had enough money for one shot and had a miscarriage doesn't have additional concerns or sadness? It doesn't acknowledge that some days are harder. It doesn't acknowledge that losses are really different. It makes me feel that there is no hope for these burns to heal into at least scars because you will always hurt equally. And it sort of ticks me off.

Here's why. Everyone I meet who didn't know Perry or doesn't know me treats it like he never existed, or at best, like a miscarriage because that is their frame of reference. And society treats miscarriages pretty badly anyway. But if you have ever given birth, ever held a baby in your arms, you know that is a life changing moment. It gives a face to your child, and to give birth every Mom opens themselves to potential sacrifice. Your body is not your own for this time, it works for your child. This child is no longer a nebulous dream it is a specific person. When infant loss boards are also miscarriage board it just confirms what society believes in an arena where it shouldn't.

To make it easier on them, people try to imagine an infant death as an unformed person. But the fingers and toes are all there. And if you are fortunate, and the child lives a little longer or was active in the womb, you can begin to see personality too. The problem with lumping an infant death with miscarriage is that it denies that the parent ever met their child. Miscarriages and child deaths do share the loss of future. But with a child that is born as a stillbirth or a living child (and I am not making distinctions in age of gestation) the parent has a mental picture of what exactly is lost that haunts them. They miss an individual and not a dream of an individual.

With stillbirths and early loss after birth, there is an additional trauma that I didn't have and that I am sure she needed support for. She left this specific baby there and was never able to take him/her home.

With a later loss,  in the time that parents spend with a living child they comes to know the individual and they mourn for a person. That is another difference. It is hurtful for those that never got to know their child, but a different sort of intense pain to lose somebody that you love and value for their personality and features. To never hear that particular cry again except maybe in videos if they were lucky enough to capture that and not just ideal home scenes. Or maybe they even deleted these, because they weren't what they were trying to capture, but would give anything to get them back... An infant death is also just extremely wrong. My son was healthy and young. I think it hurts me more than the loss of my Grandparents because they lived full lives. It's an intensely complicated grief for me, because there is no easy explaination.

 I think after the 2nd and 3rd miscarriages, Perry was very healing because I loved him so much it made all the pain worth it. I loved this particular boy that I was grateful for the timing. I felt like he was meant to be and I didn't want another child, I wanted him. So if it meant I had to have miscarriages but arrived at this particular blessing as a result, I could deal with that. I felt a little guilty over it even. But if all my pregnancies has stuck I would not have the exact children that I was blessed with here on earth, and I really cannot imagine having any other children. I don't want to trade them. So it is this definitive knowing of a particular child (his eyes, hands, personality, long super hooves) that makes his death so painful to me. I don't say that I don't understand the pain of other losses. I personally can only imagine the horror of not being able to take your baby home, and can see how she needed similar women to talk to. It was just pretty cold for women to think she shouldn't hurt differently or on a different level.They definitely weren't trying to help, just lashing out angrily in their own pain. One woman said her Mom minimized her loss because she had a stillbirth, but yet here she was doing the same in reverse. You minimize any loss when you do not reccognize it is unique. I hope they will stop grouping all losses on the same board. I hope these women never experience a stillbirth or a loss of a child. A miscarriage is their 10 on a pain scale. My son is mine, it isn't the same as theirs anymore.

Actually that's not even true- I know there are worse, or some type of losses so different that I am not even sure how to categorize them.  I can't imagine the horror of one lady whose husband shook her baby to death and now she is attending his murder trail or parents whose children are abducted. I also don't know the exact pain of watching your last chance at a pregnancy go by... I have no clue in that area to know how to group it. But I can know that it is hurtful, I know the loss of my first pregnancy and that doubt of if I could ever have a biological child. If I said all losses were the same, how could I really support them when what they need is different than what I myself need?

I am trying to accept that with time, maybe this grief will subside some.That pain level does not have to equal my level of love. Perhaps there will come a time when I will not feel as raw as the women on the miscarriage list. I like the idea of recovery because I will not be normal again, just as a former alcholic will never be the same if they hope to change. It acknowledges that I will always be different, but maybe I can live again, even if it looks completely different. It doesn't expect me to be the same, to forget my son. I will never be the same young woman but maybe I do not have to hurt so much. Maybe I can look at his pictures with the joy of remembering him again without the memories of seeing him dead for the first time tangled up in it. Most of the other women on this board, they don't get that.

So I deleted their group, RIP. At least I can throw this needless pain away.

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