Sometimes, it's not grief

I was talking to my friend Ashley not long about people who think they know what you’re going through because they have gone through something that they perceive as being similar. He told me that I could meet someone else who also lost a 6 week old child on August 21^st to SIDS and that we would still have differences in our experiences. He was right.

Been thinking about that, but also been thinking about the discrepancies between losing a child who has survived birth in comparison to having a child with a disability or losing a child during pregnancy. All of these situations are vastly different, yet sometimes get grouped together and when they do, it floors me at how people react to them.

I noticed right away that soon after having Toby, friends started wanting to hook me up with people who’d had stillborns or miscarriages. I guess they figured, you know, they’re all babies so it must be the same. Well, it’s not. I have a friend who has had two stillbirths and while I am very sad for her and I think that’s awful, I can’t relate. She can’t relate to me, either. Both situations are awful, but they’re different kinds of awful.

Infant death is even different from child death. I met another woman who had lost her teenage son and while I think I can relate a little bit to that (we both had the chance to get to know our children before they died), there were a lot of things that she went through simply due to his age that I didn’t go through due to Toby’s age.

The next thing that happened had to do with pregnancy. One of the worst things that you can say to a person who’s had a miscarriage or stillbirth is, “You’re young. You can always have another one.” But, unfortunately, that is a common assumption. (And it might not even be true. Maybe they can’t have another one, and even if they did, it doesn’t replace the one that they lost.)

On the other hand, if you lose an infant or a child, you tend to get just the opposite. Try getting pregnant a few months, or even a year or more, after losing a baby and then watch the expression on some people’s faces. What? “You can’t just have another baby to replace the one you lost!” And no, nobody has actually said that to us, but I’ve heard just about everything BUT those actual words.

One person gave us a long speech about how we should wait a year, focus on Sam, etc. etc. and then told us that it was their duty to tell us these things as a “friend.” No, it’s not, actually. In fact, it’s not your business at all.

One of the biggest discrepancies I have noticed, however, is how people start acting and thinking as though your grief defines you. You get to the point where it’s hard to do ANYTHING without people thinking it’s a product of your grief. And sometimes, it’s just not.

Yeah, if I break down and start crying in the middle of the day, it’s probably because I’m sad. That’s probably because I am grieving. But if you say something stupid to me or offend me or my family and I get angry, it’s not because I’m grieving. It’s because you’re being a prick.

SIDS is the number one cause of infant death in the United States. It is not a condition or a medical problem. Infant death is labeled “SIDS” after everything else has been ruled out and they can’t find a reason for the death.

I read a quote by a leading researcher in the field who said that if they ever figure out what causes SIDS and how to prevent it, it won’t be because of scientists or researchers, but rather because a group of parents got together and did their own research and figured it out. I kind of believe this because the support group that I belong to is better informed than any information that I have gotten from a brochure, hospital, parenting book, or website.

There is a discrepancy here, though, too. And it also goes back to grief.

I also do a lot of research for SIDS. I work as a writer anyway so research is part of my job description. When I have some downtime, I read research studies pertaining to SIDS, theories, message boards-whatever. I like to be informed. I also do this whenever someone in my family has a surgery or gets diagnosed with an illness that I am not familiar with. It’s just my nature and I like to know as much as I can.

People tell me, though, that this is part of my grief cycle and that once I learn “acceptance” I won’t do this anymore. Kind of funny since I have far more about gallstones than I have about SIDS, but maybe that’s just because I haven’t “accepted” that, either.

Last week, I got upset that we still hadn’t received an autopsy report back yet. The death certificate still says “pending.” Even if it just says “SIDS” I would take that as SOMETHING. But not knowing really bothers me. We’re having another child. If there is a genetic problem or any kind of condition that affected Toby that might be hereditary, then it would sure be nice to know what to test for or what to look out for.  

A lot of people express frustration with me, because it has been almost 5 months and it was only supposed to take a couple of weeks. But there are other people who say that it doesn’t make a difference what the death certificate or autopsy report says, because he’s gone either way. That we need to learn “acceptance” and then we will be able to move on.

Pete pointed out that with some medical conditions and disabilities, you might not know WHY they happened, but at least you know what they are. I don’t know why I have epilepsy, but at least I know it’s epilepsy.

It reminds me of “The Golden Girls” episode where Dorothy is really sick and goes to a bunch of different doctors who tell her that nothing is wrong. Finally, she goes to someone who tells her that it’s Chronic Fatigue Syndrome and she gets happy because at least she knows what it’s called, even if she can’t get it cured. Having a name for something IS really helpful.

There are people who lose children, spouses, friends, and parents to drunk drivers, diseases, and other medical conditions and then become advocates in those fields. There are people who have friends or family members with disabilities and do the same thing. They organize fundraisers, help change legislation, and write books. They even help get medication out to the public that was once either not available or too expensive for most people to afford. These people are applauded.

They’re thought of as being strong people and applauded for the fact that they are going to help some other person maybe not have to go through the same thing that they did. But if you lose a child to SIDS and you do the same thing then you’re just “grieving” and haven’t moved on yet.

It just makes me frustrated.

And by the way, the Kubler-Ross “Grief Cycle” that people like to point out to me all the time (and assume that I am going through one of the stages) was never intended to be used in cases of death. It was developed for a person who was going through a terminal illness. Again, not the same thing.

There are a couple of reasons why the model doesn’t fit for a death, the biggest example being the “bargaining” stage. If the person has a terminal illness or a disability then bargaining might be an option. (Not a viable one, but at least you still have a person to bargain for.) After death, there aren’t a lot of things to bargain with.

In addition, the second part of the cycle, the “anger stage” is difficult in some situations because according to the model the anger is “misplaced anger.” However, in some situations the anger is justifiable and not “misplaced.” That wouldn’t apply in those situations, either.

This isn’t just me blowing off steam, either. There have been a lot of criticisms of this model in reference to those who are going through bereavement. Yale even conducted a study between 2000-2003 that found that many of the bereaved individuals that were studied did not fit this model at all.

I know I have said this before, but it still holds true: We might be grieving, but we still have minds. Someone wrote in their blog about me on how on the day Toby died I was “vacant” and “didn’t know what was going on.” Unfortunately, that is not true. I was very well aware of what was going on and to my distress, I remember every second of that day in perfect detail-except for the brief period that I passed out for a couple of hours and got some sleep.

It’s still true. Yes, I am grieving, but I still have a mind and a life. I still think, I still make decisions, I still read, still have my critical thinking skills and a touch of creativity, still enjoy watching a good movie, still laugh, still have good dreams, still get frustrated over little things even though I know they’re just little, and still know how to balance my checkbook. While grief might cloud some things and always hover over my life, it doesn’t dictate it. I wish it did sometimes. It would be nice on some days to just check out, not think, and not have to make any decisions. But that doesn’t happen.

I had someone else tell me fairly recently that I would have “good days again.” That’s kind of the weird thing. You DO have good days. I’ve been having “good days” since Toby died. You just can’t help it.

Sometimes, it’s not just grief. Sometimes it’s life.