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.

Support Group

November 3, 2010

Pete and I went to our first joint support group meeting last night. This one was a little different because while everyone there had lost a child, they had all been infants so we had a little more in common. It was very sad. You sit there and look at other people in the room who are all about the same age as you and married and look like nice people and you think, this is not a club that any of us want to belong to.

It was a little awkward because we didn’t know anyone there and other people all knew each other because they had been going for awhile. Plus, we actually wanted to talk a lot. I don’t think we dominated (much) but maybe that happens on your first visit. It was good for Pete because he hasn’t really ad anyone to talk to except for me and Mom so I think he was trying to get it all out at once. We are so used to being judged and analyzed and stuff when we talk that we really restrain ourselves around a lot of people (not everyone, just a lot) so being in a setting like that was really comfortable.

Of course, I can’t talk about what anyone else said, but I can say that most of the people are going to try to have subsequent children. This made me feel a lot better. I am finding it kind of odd that if someone has a miscarriage or stillbirth one of the biggest (and worst) things that people say to them are, “You’re wrong, you can have another one.” Yet, if a child dies and you say you want to have another one you get, “Are you sure your body can handle it? Are you sure your mental health is okay? Shouldn’t you wait at least a year?” There seems to be a stigma attached to those who have lost a child that lived and now want to have another one in comparison to those that suffered a miscarriage or stillbirth where having another one is almost pushed on them. Just an observation. I say do what you want.

One thing that the moderator said, and I’ve said it over and over myself, is that you should grieve how you want to and in the way that’s right for you. There is no “right way” or “wrong way” since it’s all personal. I grieve differently than Pete and Mom yet it’s all kind of similar. Things that make me sad are not necessarily the things that make Pete sad and that’s okay, too.

So it was good to get out and see people and stuff. I also bought some Tylenol PM on the way home and took it last night and slept like a log. Woke up this morning feeling a little fuzzy, but at least I got up before noon so that was something. I am hoping to get my sleeping pattern regulated again. 

If anyone else out there is looking for a perinatal support group, then they meet the first Tuesday of every month at the Hospice of the Bluegrass Grief and Education Center in Lexington. Next month, however, they are having a candlelight ceremony at the Beaumont Presbyterian Church. 

I am thinking of adding a new motto to my blog: “"If you think the things I say out loud are bad, you should hear the things I keep to myself."

I'm getting there

October 8, 2010

I went to the chiropractor today. That was a big feat for me. I had been putting it off because the last time I was there Toby was with me and it’s been difficult to return to places that we had previously been in together. It went okay, though. My back finally gave in and I had to suck it up and go.

While I was there, we talked about how people stop coming around after a death because they’re not sure what they’re supposed to say. He said that he had a friend die and that a couple of weeks after the death he and another guy were talking about going and visiting the friend’s mother. The friend was like, “Nah, I bet she has a lot of people around her” and my doctor was like, “I bet she doesn’t” and he was right.

It is weird to go the week of the funeral with a houseful of people and then, wham, nobody. Well, I can’t see nobody. I have seen Karen more in the past few weeks than I have all year. But it’s not their fault. People have lives to get back to and kids to take care of and that’s just the way it is. It’s not a bad thing, but it is a difficult thing.

I felt so cloistered during my pregnancy. I went from seeing my friends several times a week to not seeing them at all and that really, really hurt. A few made a faint effort but for the most part I sat here alone all day. Yes, I was sick for a good part of the pregnancy, but my mind still worked. I could still watch movies and talk. I think if I get pregnant again I am not going to tell anyone in case it scares them all off again or something.

It’s funny sometimes with Toby how the good memories are almost worse than the bad ones. I know I’ve said that before and that I am repeating myself, but it’s true. I found myself crying today over the memory of something silly that he did. I also started keeping a journal, starting from the minute that he was born, so that I could remember every minute with him because eventually I will forget.  That’s just the way that happens. I want to be able to remember him, too.

I am shocked at the people who have been really supportive of us through this. Becca and Sha were there for the birth and Becca basically ran my life during that first week after he died. I couldn’t have done anything without her. And then Melissa, who in her own way has struggles that are almost greater than mine (certainly longer) stepped up and had the yardsale and took me to get my hair done and has just been an all around great support. And we were barely friends to begin with! I mean, I always liked her, but we hadn’t seen each other since high school. People that I barely knew in high school have sent me checks to put toward Toby’s headstone, as have people from the writer’s retreat that we went to. Heather Howard, another old high school friend, went to the support group meeting with me.

Yet Lori, my best friend for almost 20 years, wrote me a three sentence email and I haven’t heard from her since. Didn’t show up to the visitation or the funeral or even send a card. People are strange.

I hear from cousin Katerina (and she’s just a cousin by marriage) from time to time and we’ve talked about what’s going on yet I haven’t heard a single word from my sister at all (and she lost a child herself so you’d think we would finally have something in common). Some of Pete’s friends from Lampeter that we hadn’t heard from in awhile sent us some beautiful flowers while some of his “good friends” did nothing but bring us more grief-something that I can’t wrap my head around. Things like this bring out the good and bad in people.

On the upside, you really do figure out who’s worth keeping around and who isn’t.

People keep telling me how much I have it together, but I really don’t. They just see the good parts, the me after I’ve had my anxiety medication and I’m out and about. At home, I’m pretty looney. I keep a sleeping bag in Toby’s room, for instance, and sometimes conk out in there until Pete comes and pulls me out sometimes in the middle of the night. I forget everything. I can remember to take care of Sam but I have little patience with him and that makes me sad. I can work my job fine, but I have trouble finding the motivation to take a shower (even though baths I do every night).

Small decisions are very, very hard to make. Large ones seem to come quite easily.

Some nights I wonder how crazy I would really be if I drove to the cemetery and stretched out across his grave.

I can tell that the day is beautiful and sunny and I want  to be out in it, but I can’t get my foot out the door and once I’m out I start panicking and I’m nervous until I’m back home again.

I get little panic attacks all throughout the day. I’m afraid to open my text messages sometimes because I’m nervous that I’ll get something from the other side of the ocean that really will send me over the edge. I close my eyes when I open my inbox, just in case someone has written me a nasty e-mail or left a nasty comment on my blog.

I actually cut myself. Not in a suicidal way, but in a way that definitely wasn’t healthy. The inclination arose when Pete’s brother in law wrote me and it got worse with the texts from Pete’s dad but then it sent me over when I got the nasty messages from Pete’s old high school friend and his girlfriend. I just picked up a razor and started hacking into my wrist. Pete had to bandage it and doctor it and then I had to lie to Sam about why I had a big band aid on me. I’ve never done anything like that before. Never had suicidal thoughts. I talked to the doctor about it and she said that it was normal. That it was a way of expressing my emotional pain through physical pain. But it’s still not “me.” My friend came over that next night and before she left she wrote Pete’s name on one wrist and Sam’s on the other and while I appreciated the sentiment, it also made me sad because whenever I looked at their names I remembered how unhelpful I was being to them and instead of reminding me of reasons that I had to live, it reminded me of how useless I was being to both of them.

But at least that’s getting better. My depression medication has been increased and I’m taking the anxiety medication like I’m supposed to and I’m sleeping a little bit better. I think my patience with Sam is getting better, too. I was able to play with him tonight for about 30 minutes and last night we made a cake together so I’m getting there.

We found an infant support group meeting in November that we are going to try to make. Pete said that he would go with me so I think it will be good for us. We’re trying, anyway. I also hope to have a little Halloween party for Sam sometime soon because he deserves something fun and I guess I would like to see people in a less somber way. 

Support Group

October 6, 2010

Well, I went to my first support group meeting last night, courtesy of my friend Heather. It was a small meeting with just a handful of us but I think that’s better. They were all parents who had lost children, but none of their children had been infants so we were kind of on different wavelengths. Still, there were some commonalities and it was good to talk to people who have “been there.”

What surprised me the most was that although mine was the most recent, with the other losses having happened years ago, it was still so fresh for everyone. That’s what I hate about putting a deadline on grief. You never really “get over” it. You just can’t. I learned that from Nana. Things get a little easier and you don’t find yourself breaking down and bawling in the middle of Wal-Mart as often, but it’s still there.

We also talked about “things people say” to be “helpful” and we all laughed because we have all heard the same things. My new favorite is “He’s in a better place.” Well, I don’t want him in a better place. I want him right here, in this crappy place, with me.  Or the Pizza Hut waitress who told us that it was okay because he was with Pete’s Mom. (We even got bits of this before she died.) Hey, what’s wrong with my dead relatives? My Uncle Junior might have drank a lot in his…erm…younger days and maybe he took off and lived on an Indian reservation for awhile and perhaps years would go by before anyone in the family would see or hear from him but he loved babies.

Anyway, that’s some of the crazy stuff that goes through your head sometimes.

I am now down to just a couple of anxiety pills at a time. I mean, in a day. Seriously, they only take the edge off. And the anxiety hits the hardest at the weirdest moments. I can go to his grave and stay there and put flowers on it and not cry at all. And then, driving home, we’ll drive past Cedar Village, I’ll remember eating there with him, and I will burst into tears.

I am finding that the happy memories of him are almost just as bad (and in many ways worse) the death-related ones. How weird is that? I have heard that it’s normal.

I wrote an e-mail to somebody that I barely know and have only met once, but we’ve exchanged emails from time to time and I wanted to let her know that Toby had passed away. It’s easier to do that than to see the person and have them be like, “Oh, how’s the baby?” which has happened a few times. Anyway, she very nicely gave me her number and said that I could call her if I wanted to talk to someone outside of the situation, more or less. Sometimes, I really want to do. Except I feel so screwy on even the best days that I’m afraid of what I might say.

To get a better feel for this, I have done what I should have done to start with- I have made an appointment for me and Pete….with my astrologer. We go there on Thursday. Updates to follow.