Even Your Child Can Hurt Your Feelings

March 30, 2011

I’ve now spent about five days on bed rest and it’s really boring. We have a little sitting room in our bedroom with an entertainment center, love seat, and balcony and that’s nice because it means that I can lie on the sofa and don’t necessarily have to stay in bed all day, but it still stinks. What’s especially hard is that until Mom or Pete comes back Sam has to stay in there with me. Thankfully, he’s been sleeping late so when he wakes up I just turn on the cartoons for him or he stays there on the bed with me and draws. It has to be boring for him, too, though.

Tonight he got upset with me because I couldn’t go downstairs and play with him. I know that he was bored because Mom was busy packing, Pete was on the computer, and I was upstairs. I wish he had someone to play with. But when I told him that I couldn’t come he told me that I “needed to die.” It really hurt my feelings and made me cry. It made him cry, too, and he told me that he was joking but it still hurt.

He’s been asking a lot about Toby lately and last night we watched “One Born Every Minute” and he was riveted. He loves seeing the babies and he asked me a lot of questions about “Baby Sister” and her upcoming birth. We’ve actually not talked about her a lot with him in case something happens but the closer we get, the more we share with him. I think he’s starting to get excited, but I know it’s still difficult for him. To him, a baby represents death and there’s just no way to change it at this point. Once she gets here and he sees that she’s not going to die I think things will get better.

I mostly don’t talk about these things to people because it’s hard and they don’t know what to say. And then they do say things and it just comes out wrong or harsh. I was talking to one of my aunts the other day, for instance, and when she asked how I was doing I told her that we were just trying to stop the labor at this point. To this she replied, “Well, it was probably that trip to Myrtle Beach that made this happen.” Well, gee, thanks. (And it wasn’t.)

I don’t want to get angry at people for trying to be optimistic and trying to make me feel better, but there’s a line between being optimistic and dismissing valid concerns, too. We’re going to start steroid shots at 30 weeks to help develop the lungs and our best goal is to make it to 32 weeks. If we can make it that far then we have scheduled a C-section at 37 weeks. Even 32 weeks, though, is kind of risky. I have a friend who delivered at 32 weeks and her son is doing okay now but it was touchy there in the beginning. I have another whose son was born at 36 weeks like Toby and he spent a month in the NICU. (We were lucky with Toby in that regard.) But just because things were okay for one person doesn’t mean that they will be okay for another. I understand this. But telling a person that things will be “fine” is kind of like saying, “What are you worrying about?” Sometimes I want to retort something like, “Yeah, things should be fine. But you put your children in bed every night and they wake up the next morning, too.” Once something bad like this has happened, you kind of lose your innocence about such things and it’s hard to go back to that again.

I guess what it's hard to explain to other people is that while they have been concerned about their children and worried about them, we've actually had the worst thing that could happen, happen. Once that has occurred, it's very very difficult to go back to believing that nothing bad can happen again.  And no amount of pep talks, statistics, or optimism can change that. 

When they told me last week that Iris might be born that night and live as long as a couple of hours I wanted details. Would they let me hold her? Could I give her a bath? Would she suffer? I thought about my camera in my hospital bag and was glad that I had brought it because I wanted to take pictures of her. I know that it sounds morbid, but it was better for me to be prepared then to have it happen and not use or take for granted the little opportunity that I had with her.  Obviously, I was glad that things didn’t turn out that way, but having a plan made me feel better. I thought about songs I could sing to her, a story I could tell, and what I would say to her. I thought it might be easier to think about those things beforehand then to wait until she was there and I was emotionally distraught and didn’t know what to do.

Other people said, “Oh, things aren’t going to be that bad! Everything will turn out fine!” But they didn’t know that. I didn’t know that. But I would have given anything to have had some advanced warning with Toby so that I could have held him longer, talked to him, done things to comfort him. I didn’t want to have regrets like that a second time. They let Mom hold him before they took him to Frankfort for the autopsy and at that point I had already said goodbye to him. I didn’t know that I was even allowed to hold him or I would have. So I am asking more questions this time.

I’m considering writing a book about my experience with grief. Titles I have considered are “My Kid Died and I’m a Little Bitter”, “You Can’t Be Selfish in Grief” and “Losing a Child and Trying to Survive Other People.”

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."

Why People Cut

I hate to put myself in this category, but there you go. Since I have little experience in this, I thought I would try to learn some information about it. One woman that I know personally who cuts herself said that she uses a rubberband that she snaps so that she can still feel the pain without actually cutting herself. I might try that, but for me it might actually be the markings that I am going for. Since I have no signs of pregnancy, either on my body or in the house, maybe sometimes I feel like if I have some marking on my body it will be a reminder of the pain I feel for Toby.

And then somedays, that's not it at all. Some days I just feel terribly numb and want to feel something.

On other days, I am overwhelmed and want to feel in control and that is something that I have complete control over.

Other days, I keep seeing images in my mind that I can't get out and the pain of cutting helps erase them.

There is no one answer. But this article might be helpful for some...

Taken from: http://helpguide.org/mental/self_injury.htm
Cutting and Self-Harm: Self-Injury Help, Support, and Treatment

Whether you’re dealing with a past trauma or facing overwhelming issues in everyday life, you may have turned to cutting yourself or other self-harm as a way to cope with your problems. Whatever the reason, there is help—and hope—available. Cutting and other self-injury may make you feel briefly like you’re better able to handle life again, but then the pain returns without any permanent recovery.

You can end this dangerous cycle by learning safer, more healing ways to deal with your problems. There are professionals who can provide treatment, and ways you can help yourself. You have the power to find healthier ways to manage your pain.


Understanding cutting and self-harm

Cutting and self-harm are often ways to express deep distress and cope with painful memories. And although you may want to stop, you may not know how to begin. Understanding why you self-harm can be a vital first step toward your recovery. If you can figure out what function your self-injury serves, you can learn other ways to get those needs met—which in turn can reduce your desire to hurt yourself. Once you better understand why you self-harm, you can learn ways to stop self-harming, and find resources that can support you through this struggle.

Myths and facts about cutting and self-harm

Because cutting and other means of self-harm tend to be taboo subjects, the people around you—and possibly even you—may harbor serious misconceptions about your motivations and state of mind.
Myth: Self-harm is a suicidal act.

• Fact: Although people do die from self-harm, these instances are accidental; in general, self-harmers do not want to die. In fact, self-injury may be a way of coping, of regaining control of pain—in order to go on living.

Myth: People who self-injure are crazy.

• Fact: Those who self-harm are usually dealing with trauma, not mental health problems. There are exceptions, but by and large, you are probably trying to cope with problems in the only way you know how.

Myth: Injuring yourself is a cry for attention.

• Fact: Friends, family, and even healthcare professionals may think that if you hurt yourself, you are seeking attention, but the painful truth is that people who self-harm generally try to hide what they are doing—rather than draw attention to it—because they feel ashamed and afraid.

Self-harm and your emotions

You may find yourself more likely to self-harm after an overwhelming or distressing experience, or series of experiences. It’s possible that you never learned how to identify or express difficult feelings in a healthy way. Understanding your emotions and how they may make you want to self-harm can be another important step toward recovery.

Emotional reasons behind cutting and self-harm

When emotions feel out of hand and you can’t cope with your pain, you may turn to cutting yourself or other self-harm. Self-harm may be how you:

• Regulate strong emotions. If you are experiencing high stress, self-harm can—temporarily—calm your nerves.
• Distract yourself from emotional pain. You may feel emotionally “numbed” by past traumas and need a way to force yourself into feeling something.
• Express things that cannot be put into words. Self-harm may be the only way you know how to display anger or deep sadness.
• Exert a sense of control over your body.  You may imagine that hurting yourself will prevent something worse from happening.
• Self-punish or express self-hate. You may have a childhood history of physical, sexual, or emotional abuse and erroneously blame yourself for it. Self-harm can be a way to punish yourself.
• Self-soothe. You may not know any other means to calm intense emotions.

Common emotional traits of self-injurers

Although everyone’s story is unique, if you cut or self-harm, chances are you have certain emotional issues in common with other self-harmers.

• Magical thinking. You may believe that your physical wounds prove your emotional pain is real, or that if you harm yourself, no greater harm will come to you.
• Growing up in a family where emotions weren’t allowed. You may have been discouraged from expressions of anger while growing up, and as a result be unsure what to do with strong feelings.
• Other emotional problems. You may have co-existing problems with obsessive-compulsive disorder, substance abuse, depression, or an eating disorder—all conditions primarily about control.
• Limited support. You may have a limited social support network, perhaps due to family breakdown or shame about your self-harm.

In Your Own Words

It can be difficult to understand the motivations behind cutting and self-harm, even when it’s your own. But a clearer picture may develop when you hear the common explanations people give for self-injury:

• “It expresses emotional pain or feelings that I’m unable to put into words. It puts a punctuation mark on what I’m feeling on the inside!”
• “It’s a way to have control over my body because I can’t control anything else in my life.”
• “I usually feel like I have a black hole in the pit of my stomach, at least if I feel pain it’s better than feeling nothing.”
• “I feel relieved and less anxious after I cut. The emotional pain slowly slips away into the physical pain.”

Going through the Motions

This is another article found on the Silent Grief website. The original article appeared at:http://www.silentgrief.com/articles/index.cgi?view_records=1&Category=Loss+Of+A+Young+Child&ID=25

I, too, feel a lot like this. That's one of the reasons that even though I sometimes don't WANT to leave the house I try to leave anyway and do different things. I know that I'm not alone in this, others going through similar things have told me the same thing.

I'm afraid that people invite us out or invite us to do things and they might actually get offended we turn them down, but the fact of the matter is, there are some days when we just CAN'T leave. Or we do and we have panic or grief attacks. Like at that author reading the other night, which really should have been pretty easy to me. For now, I just have to say that it's not personal and that we still like to get invitations but if we can't come it's not because we don't like you or think you smell. In fact, I've cried because I've wanted to go to things but couldn't. Some days, it's all I can do to go to work and all that entails for me is getting out of bed and walking down the hallway to my office!

So here is an article that might give some insight into some of these things.


Going Through the Motions
Written by Clara Hinton | Oct 07, 2001
When a young child dies, the impact of the loss on a parent is devastating. American society allows only a few days off from work to recognize the death, and then life is soon supposed to take on the look and feel of normalcy in a very rapid time. Grief doesn’t work that way!

Many times, parents will say that entering the house where their child once walked and talked and played is an overwhelming grief. Their entire world has been torn apart, and nothing seems to make sense any more. Simple tasks such as getting dressed, brushing teeth, and combing hair are major chores for the parent who is experiencing the early stages of deep, unrelenting grief.

After a few weeks of feeling numb and just bumping around through the daily routine of life, parents realize that they are not functioning well. Decision-making is difficult. It is a major ordeal to organize thoughts enough to do the marketing and to try to put together a meal. It is extremely difficult to remember such things as walking the dog or remembering to pay the bills. A parent in deep grief realizes these difficulties exist, but feels powerless to change the situation.

Going through the motions of the everyday activities of living is quite difficult for a parent who has lost a young child. Because it is so totally out of the normal text of life for a child to die, life feels like it is whirling out of control. Nothing makes much sense. Yet, the fact remains that the daily activities of living must continue on in spite of the inability to function at regular speed. A parent is still required to perform duties at work and at home, when, in fact, most days it feels like all you can do is move through the motions, falling into bed at the end of the day in tears.

Going through the motions without feelings is quite normal in the early stages of grief following the death of a young child. We often fall into the trap of believing that we should snap to it and get back to normal living in a few weeks. When life has been torn apart, it takes time to pick up the broken pieces and move on. Grief is hard work and drains every area of our living.

Parents need to remind themselves each day that this lack of feeling joy and the inability to concentrate will not last forever. It is common for parents to look back on the first year following the death of their child and wonder how they managed to get through those first several months. They can’t remember very much of anything. Life, in general, can be described as a big blur. Parents will say they lived in a fog and don’t remember much of anything.

When does this numb feeling end? When does a parent begin doing more than just go through the motions? There is no exact time when enthusiasm for living begins to return. You will begin noticing subtle changes that will tell you that you are on the path to healing. Slowly, but surely, you will begin to keep appointments. You will remember to pay the bills on time. You will be able to make decisions about what clothes to wear and what food to prepare for the day. Getting out of bed in the morning is something you want to do. You will notice the beauty in a sunrise.

Part of a parent dies when a young child dies. You will feel like you are only going through the motions of living for a long time. Remember that grief is one step at a time, and one day at a time. Sometimes, we only manage one hour at a time. The good news is that each amount of time is a minute closer to your own personal journey of healing. And, that day will surely come!

Another Late Night

October 14, 2010

I have also updated my Travels and Rambles blog. The most recent post regards my thoughts about writers. You can find the link to that blog on this page as well.

Someone asked Mom the other day if things were getting “better” at our house and she didn’t know how to answer that. Is it better that time has gone by? Are we eating better? Sleeping better? It’s almost like we have to re-learn how to communicate with people.

Like today, I posted on FB about how now at this point Toby has been dead longer than he was alive and someone wrote in and said “But your memories will last forever.” Like it was a Hallmark Greeting card or something. And I KNOW that shouldn’t make me upset and that the person was honestly just trying to be helpful, yet I felt my blood rise. Why?

Maybe because it was such a simple, meaningless thing to say. Some offhand comment that could be said about anything, even in jest. And maybe because memories do last forever-even the bad ones. I will never forget the look of him after he died, once lividity had set in. When his cheeks and tongue were blue and the blood was pooling in his arms, leaving white splotches on his elbows and fingers. Or how that little line of blood trickled out of his mouth from where they had put the tube in and no matter how I kept wiping it away, it kept coming back. Those memories won’t go away either.

I need space from people, but I need to see people, too. I have so much anxiety that it’s unbelievable. Last night I went to a reading by an author I liked and in the middle of it I had a panic attack. I had the attack because a woman who had been at the Grailville retreat, where we had Toby with us, was in the audience and didn’t recognize me. She had no idea who I was, even though I had invited HER to the event last night and I even reminded her that I had been the one at the retreat with the baby. Still, not a trace of recognition.

The attacks come on slowly and coldly. I don’t think I’m having a heart attack and I don’t feel the walls closing in on me. But I do feel coldness and deepness and everything seems so big. The room feels big, the chair feels big-even I feel big. Maybe that’s why I like spending so much time in our pool room, because even though it’s the biggest room in the house, my sitting area with the couch is small and there is only one tiny window at the back of the room so it’s usually pretty dark. I can hunker on the couch, wrapped in blankets, and feel small. I can’t take the bigness.

We have Court Day this weekend and I am concerned about it. I don’t like being so far away from home and I don’t know about the crowds. A friend has invited us over afterwards and I don’t think I’ll be able to go. I get restless when I’m away and I’m not sure that I can handle being away all day and then, when we’re finished, not going straight home. After the event last night I very much felt the distance from our house and it bothered me and practically ate at me until we were on HWY 52 again, heading toward Irvine.

But yes, communication. It’s so difficult. I got in the car with my friend Melissa one day and just burst into tears. She carried like it was normal and drove to a store and bought me an Ale-8. She didn’t ask me if I needed it or wanted it or even ask me what was wrong and that was very helpful. I’m not being facetious-it really was helpful. Other people address it and want to talk about it or touch me and that just brings more attention to it and it makes me embarrassed.

I think about going to counseling and it worries me that my options here are limited. Some of the counselors have simple Psychology degrees and that would be like going to…Lynn. Good God. Then there’s the fact that I know a lot of the Comp. Care counselors because I used to work with them when I was on the other side of the fence. I need a good psychiatrist, not a counselor, but I haven’t found one. I am still going to do the group thing. Pete and I are planning on going to the session in November, if we don’t back out of it.

I wonder about things like Facebook and MySpace and my blog and how easy communication is on these things. How easy it is to send a virtual hug or a quick message or a simple text and then feel as though you’ve accomplished something and “reached out” to someone. I know I’m guilty of doing that myself. I have a whole stack of “thank you” cards to mail and I haven’t sent a single one, yet I’ve messaged people on FB and thanked them.

I wonder if I shut down all of my online access and turned off my phone if people would still come around. How much of an effort would be made then. Probably not much. I remember after Nana died that we had company for the first couple of weeks and then it slowly died down until we were rarely seeing anyone at all. People move on with their lives and when you can’t keep up with them, they just move on without you. I saw that when I was pregnant, too.

I’m not feeling particularly sad tonight. I’m just thinking about things in different ways. I slept for most of the day today because I had a bad night last night and stayed up all night. I was thinking about Pete’s friend Tom who apparently got “so upset” at something that he wrote that he “had to go for a run.” Yet I got so upset about what he and his girlfriend were writing to me and Pete that I cut my wrists. Perspective. And giving people too much power when they really don’t mean a damn to me. And when his girlfriend wrote that I was a “piece of work” and “couldn’t even blame it on grief” I took that badly. Hell, who wouldn’t? But then, I stopped and realized (okay, so this was weeks later) that she had written that to someone who had just lost their child. What kind of person does THAT? And what could she blame her ignorant immaturity on? Perspective. When one of my friends suggested that we go over and kick some British ass I laughed and said that I had met those people before and wasn’t impressed and that we should use our money instead to go to Spain because I had been there too and that was really something to see. The more I thought about it, and the more I thought about them, the more I realized that it was just words. Meaningless words written on a computer screen. There was no thought behind them, no idea of the harm they might be causing, of the long term effects that might be hindering. Just words. From people that are about as real to me as a character in a novel. Actually, I’ve read novels where the characters had more personality and were more drawn out.

Pete’s sister asked Pete how he dealt with it when people told him that he needed to move on and get on with his life. I know how I would deal with it. I would tell them to fuck off. Of course, I would do it publicly, in my blog, and cause a lot of trouble in the process. But of course, I’ve written that before. Still, it was worth repeating. It’s just words. Nobody can make you move on, regroup, or feel anything that you don’t already want to do or feel. When we stop giving people the power over us to make us feel things or act in a certain way then we can really start the process of dealing with our grief. But we can’t do that as long as we keep letting other people influence us.

I have learned that when it comes to a lot of things that people are saying or doing, it’s about them and not about us. When people tell us to move on it’s because they feel uncomfortable with our situation. When people tell us where Toby is right now (in heaven, floating around as an angel, reincarnated, or still in the house) it’s because their own beliefs are comforting to them. And that’s fine.

But I think this is a personal matter and it’s about me, too. So maybe I can grow from this and hopefully not be as resentful as I have been in the past. The astrologer told me and Pete that we might be going to England after Christmas and Pete said, “I hope not” at the same time that I said “I don’t think so.” Sometimes, in order to move forward you have to disconnect from the ones that are bringing you negativity. That I learned even before Toby died.

Lonely

Grief is a solitary confinement.

The days are going by more quickly now which is both a blessing and a curse. Toby has now been dead longer than he was actually alive. That always happens at some point, but for most people the act takes longer. It’s unfortunate that his death was able to outlive his live in a matter of weeks and not years.

I am finding that grief like a solitary confinement. Even those around you who are almost certainly going through the exact same thing can’t ever really understand what you are feeling or thinking. Everyone has different ways of processing it and dealing with it and although this is normal, and even natural, it still makes it a little lonely.

I’ve said it before and it continues to be true: I have to change the way that I act around people. Maybe people feel like they have to change the way that they act around me, but I feel the same way. I feel much more guarded about what I say because I never know how it’s going to be taken. I guess that’s what I get for being friends with a bunch of counseling/psychology/social work people. Sometimes it’s hard to turn off the job at the end of the day. I know it was for me when I worked in that profession.

I am trying to learn ways to cope with things on my own. I’ve stopped talking to certain people because they are uncomfortable with the things that we are going through and pretending to be happy and doing well in front of them is just too exhausting. Pete’s granddad (whom I actually think a lot of) asked if we were “getting over our mishaps.” He doesn’t want to hear about how we’re REALLY doing and I find it too exhausting to put up a good front.

Many of my friends I haven’t seen since the visitation or funeral. Some I haven’t seen since before then. I don’t know if they’re staying away because they don’t know what to say or do, because they’re nervous about what they might say or do, because they assume that we have lots of people around us and they might be in the way, or because we simply aren’t on their radar. It reminds me a lot of my pregnancy.

When Toby first died my doctor gave me some valium and told me to schedule a counseling session in a couple of weeks. She very wisely said that after a week or so people would stop coming around that that’s when I would need it the most. She was right.

I have found a friend (oddly enough, one I haven’t seen since high school) that also lost a child the same way and we communicate every day by e-mail. That has been very helpful but I don’t want to lean on her too hard or else I might bring back painful memories for her that she doesn’t want to relive. Kind of like wearing out your welcome.

Another friend offered to take me to a support group meeting and we went (as you might have read about in a previous entry) but when I asked her if she could go to one with me and Pete that deals in infant grief she said that it would make her feel “intrusive” and then I felt embarrassed having asked her in the first place. But I guess I should have known people.

People say, “Let me know if you need anything” but I’m never sure if they’re just saying it to be polite or if they actually mean it. And what’s too much to ask of someone? And what do I really need to begin with?

I get long e-mails and chat sessions from friends apologizing for not coming over and telling me about their health issues and money issues and such but listening to them is sometimes like watching something on television. It doesn’t feel real, or like it has anything to do with me. I don’t want to use the phrase “hollow excuses” but that’s what pops into my mind from time to time. I have friends who are more interested in telling me about their woes and their experiences with panic attacks and suicidal thoughts than actually trying to get together with me and talking to me. They seem to talk “at” me and to “to” me, if that makes any sense. I have other friends (well, some of them are the same friends) that are more interested in looking up statistics on SIDS and writing me about different things that they have found that might be helpful to me, as though I am incapable of a simple Google search, then making a point of seeing me. Maybe they think they’re helping that way. Maybe for them, that’s the best they can offer. At least when Heather found the group last week she offered to go with me and that was incredibly kind of her.


It’s even hard for us to relate to each other in our own house. Pete got angry at me back in August when I suggested that we do something to celebrate our wedding anniversary because it was so close to Toby’s death, and while I understood that celebrating might not be the best idea at the time, I still wanted to honor the fact that we had been married for 3 years.

I sit here by myself all day and sometimes when he comes home I follow him around like a little puppy dog. In fact, sometimes I feel like a puppy dog, waiting my turn to be fed or taken out or given attention to. It’s like I’m trying to be obedient and helpful and not cause anyone any extra trouble but sometimes I can’t help it. I can’t lay all of my feelings on him and really talk to him because he has tests to grade for work and papers to look at and his own book that he is writing on and he has to try to find time to fit all of that into his schedule and that’s usually at night after Sam goes to bed. Or he has to fit in his runs when he has extra time during the day and he doesn’t get a lot of free time.

When I told him once that I was having suicidal thoughts he immediately suggested a psychiatrist or even me being admitted to a hospital since he and Mom can’t be here all day to keep their eye on me. I feel like such a bother for everyone. I can’t even do my fair share of taking care of Sam. I tried to today, though. We did pumpkins together and decorated a lot for Halloween. And yesterday we went to a fall festival and took a hayride to pick things out and that was a lot of fun. I’m not taking as much medication as I was, mostly because I’m afraid I’ll accidentally take too much, but I know that I need it because the anxiety doesn’t seem to be getting much better.

I’m going to give that infant support group a try and now that I am working on one big freelance project instead of several little ones I should be able to take more time off. Then maybe I can get to some counseling sessions. I feel like I’m just causing extra stress on everybody else in my family so I need to try to get better as soon as I can so that I can start picking up my slack again. Pete is too busy to take care of me and Sam both and with Mom having her stroke she doesn’t need to be doing so much, either. I’m the weakest link here and I’m the one that needs to improve.

But I guess it’s something that I’m going to have to try to figure out on my own. I’ll do it eventually, but it’s really hard sometimes. And lonely.

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.