Tough Week

December 12, 2010

Sam and I had a conversation about Toby the other day. He asked me if we were going to put presents under Toby’s tree and I said no. When he asked me why I said it was because Toby was gone and we couldn’t get him any presents. Sam then said, “That makes me and you sad.” I said that it did and then told him that we could put flowers on his grave. Sam goes, “But that won’t make me happy. How about we give him some cars? But not my cars. Different cars.’

I have been really sick lately. They told me I had gallstones, but tonight I had to go to the ER and they did another ultrasound and said I didn’t have any. They looked really triumphant about it, but it pissed me off. I’m vomiting non-stop, haven’t kept any food or drink down in days, and am in excruciating pain.  If it’s not gallstones then what the hell is it? I went from having pain every once in awhile to every few days to every day, non-stop. It’s really frustrating.

I’m starving, too. When the thought of food isn’t making me nauseated all I can think about is eating.

I talked to a friend today on the way to the hospital and she said that if they admitted me she would bring me something nice to eat. They just gave me some fluids and Zofran through the IV and sent me home after doing a bunch of tests, but that food really sounded good. She then posted on her FB page to pray for me because I was feeling ill. Another friend wrote in and said that they had already been praying for me that day. That’s funny, since I haven’t heard from anyone since Melissa in a week. I don’t know about prayers, but a phone call would have been nice.

I shut down my FB page for the time being because it was adding to my stress. Well meaning people writing me, giving me lots of advice-a lot of it bad. Trying to play not only therapist but doctor to me. Making me talk about things that I didn’t want to talk about. Throwing their weight around like they know so much more about my health than I do, even though they never talk to me. It's weird to me when people come out of the woodwork and just start ordering me around and talking to me like I'm their project or something. It was getting ridiculous. They do it under the guise of caring about me, yet I never get asked to the movies, to dinner, to anything really and they never call just to chat. So to me it just feels like they’re trying to act like they know it all and show off their knowledge-which really isn’t any more than mine. It was just giving me a headache.

Sometimes I feel like people's project. There was a friend for awhile that acted very concerned, and did some helpful things, but later it almost felt like they were bragging to other people about all they had done for us. Plus, they were telling people that I didn't know about how suicidal I was and how badly I was doing and kind of patting themselves on the back for taking care of me and stuff and that made me feel weird. I know, I write about it here. But I choose how to say it and when. For someone else to do it makes me feel kind of icky.  I don't want to be someone's project. I don't hold up well over time.

On top of that, my cousin had a stillborn this week. She was almost full term and she had to carry the baby for a couple of days, knowing that he was gone, and then had to deliver him vaginally. It was really sad. His grandmother posted his picture on her FB page and apparently some people didn’t realize that he was dead in the picture and wrote in and said things like “congratulations.” It was really awful. He just looked like he was sleeping. That really got to me and I feel so bad for them. She had no idea that he was gone and earlier in the week was even talking about her baby shower.

On my cousin’s FB page, someone wrote in and said something like “God does everything for a reason, he’s testing your strength, seeing how you handle things like a man, etc.” He wrote back and basically told the person to take their God and their Bible and shove them. It wasn’t funny, but I almost laughed aloud. The person who wrote that to him really was just trying to help, but I totally understood his hostility. People say things that they think sound good, but really just come out clichéd and unhelpful. And I have NEVER liked the idea of “God” killing someone to test ME. I’ve wanted to shout at people, too, and in a way I use this blog to let out frustrations so it was kind of interesting to see someone just let it all out like that. But I felt very bad for him.

I read in something that parents that lose children are no longer naïve. That we know that bad things can happen and we can’t take for granted that good things are just always going to be. This is totally true. It might not sound like it from reading this, but I try to be positive when I can but since Toby died it’s been very difficult. People will say things to me like, “Oh, I prayed for you so I hope you get better soon!” And while I appreciate the sentiment, I also prayed during the entire ambulance ride and when we got to the hospital and bad things still happened. Or when I worry about a future pregnancy and someone says, “Everything will turn out fine!” Yeah, that’s what EVERYONE said to me last time, and NOTHING turned out fine. It really warps your sense of reality.

I was talking to a friend of mine that lost his partner over a year ago and he identified with a lot of my feelings. He said that most of his friends had abandoned him, too, and said things like, “Call me if you need anything” or “We should do something” and then never followed through. He said that put extra pressure on him because it made him ASK for something and he felt uncomfortable about doing that. He also said that he felt like they should have been reaching out to him and not the other way around.

We talked about the difference between losing someone to a long illness and losing someone suddenly like we did, too. In his case, his partner was older, but his death was very sudden. They were literally sitting there having a conversation and he turned his head away. When he turned back, he was gone. Heart attack.

I’ve read that even if you follow all the precautions, there’s no way to stop SIDS if it’s going to happen. That even if I had been right there at the moment I wouldn’t have been able to revive him. That his brain told his heart to stop beating and his lungs to stop breathing. Of course, I like to think that I could have done something anyway. I would have liked the chance to try to fight for him. If he had been sick, I would have taken him to every hospital in town and seen every doctor we had to help him. I would have liked to have had that opportunity. But I didn’t.

I joined an online SIDS support group and I talked to a lot of women there. One lost her baby the same day I lost Toby. They have a message board and one of the recent threads was called “Bite Me.” It was a way to vent regarding things that people had said to us or done to us. It was a lot of fun to read and I added my two cents, too. It’s kind of private, but I do remember one person writing in and saying, “To all those holiday ads featuring bouncy babies and toddlers-BITE ME. That should be MY house.” Venting with people who understand is very therapeutic.

3 months

October 1, 2010

Before Toby died I was diagnosed with PTSD. I had it the last two weeks of his life and it makes me angry because I feel like I wasn’t on my game during those weeks. Well, I know I wasn’t. Supposedly, it was brought on by his birth and might have been mixed with post partum depression. At any rate, I was a mess. Sometimes, the room would feel too big and other times it felt too small. I couldn’t get enough weight on me and when this would happen Pete would pile every blanket in the house on me. I had to stay upstairs because it’s darker than downstairs and the light bothered me. Little things made me freak out. The only thing that made me feel normal was taking the anxiety medication, which just knocked me out, and being around Toby. We almost didn’t go to Nashville for my cousin’s wedding because we weren’t sure how I would do but I’m glad we did. It’s the last good memory I have of all of us being together.

The other day I went to visit my friend and her little boy at the hospital. He had three surgeries that day and she was holding up better than I would have been. I was worried about the hospital because it’s the same one I had Toby at but we were in a different part so it didn’t feel too bad. Chasing Sam around kind of takes your mind off of things, too.

I know people probably feel like they have to change the way that they talk when they are around me and Pete, but honestly I feel like I have to change the way I talk around them, too. I’m becoming very guarded in what I say to people nowadays because most things resort back to people analyzing me and that just ticks me off. Or explaining me to myself which frustrates me even more. It’s becoming increasingly difficult to have a conversation with a lot of people because I feel like I’m having a lot of things explained to me.

Maybe I’m going through the anger stage now.

I had to defriend a person on Facebook today. It wasn’t a huge loss because it wasn’t someone that I was very close to, but it did kind of make me sad. She had been writing me all week telling me about her medical problems and when I signed on the other day she immediately started telling me about she had hemorrhaged and died the night before and how they had brought her back to life. The conversation went on and on and it sounded way too familiar to Toby’s birth (although the circumstances weren’t anything alike) and I started feeling anxious. I couldn’t talk to her.

Part of me wanted to be a good friend and listen but the other part was saying, dude, I can’t even handle my own stuff. I sure as HELL can’t handle yours. And I hated the way she kept more or less comparing our situations, like I would certainly understand what she was going through because I had “been there.” Um, this is not a club I want to belong to. I am not proud to wear this badge.

Besides, I don’t think I can be of help to anyone right now. If someone had lost their child to SIDS and wanted to talk to me about it, then I would try. I don’t know that I could be helpful, but I could listen and commiserate and we could be angry and sad together. But I’m not a counselor and I’m kind of new to this and my own moods change by the hour-sometimes faster. I don’t know that I could be good to anyone.

But somehow, I seemed to be grouped into this group of people who have had terrible things happen to them. One of my friends kept pushing me to talk to someone that they knew because that person had been through a similar experience. I wasn’t ready. Later, I found out that the person had lost their child during pregnancy. It’s not the same thing. I couldn’t relate to that. Heck, even the support groups at the hospital separate people into newborn deaths, stillborns, ectopic pregnancies, stillborns, miscarriages, and parents who have lost their children due to illnesses. In some ways, grief is grief. In other ways, it’s extremely different. I couldn’t, for instance, relate to someone who lost their 10 year old to cancer. I didn’t see Toby suffer, I didn’t spend that many years with him, and there was no illness to fight with him. I wouldn’t be able to relate to that person’s grief. Yet, you lost someone and you get grouped together.

It’s all very new and strange.

I have tried speaking to Ashley about it a little bit, since he lost someone a year ago, and although we can relate on some level (we’re both sad and seem to have trouble at night) we are both going through very different things.

I did try to call the SIDS Alliance today but the number I was given was wrong and when I researched for another number it was invalid. The closest SIDS support group seems to be in Frankfort and that’s way to far to drive, although I wouldn’t mind meeting other parents in the area. I wonder why we don’t have such a group?

Sometimes, I feel like people’s “projects”, too. But I guess that’s better than being totally ignored so I’ll let that one slide for now.

I’ve been thinking about another baby. I was trying to explain this to Pete but not doing a very good of it. It would have been one thing if we had decided to have only one child and be a single child household. We might have wondered from time to time what it would have been like to have had more and may have even had regrets on down the line. But now that we’ve had two and seen what it’s like, I don’t think we can ever go back to just having one. It will never feel the same as it did before. We will always know that our family is incomplete because we are missing someone. That is a very sad feeling.

I think I would like to try to have another baby. Actually, I know I would, but the idea scares me. I have talked about it with other people and finally I figured out that it doesn’t really matter what anyone other than Pete thinks. So I’ve stopped asking opinions.

It might even be fun to try. Sam was definitely not planned and was a huge surprise to us. Toby, on the other hand, was a little different. We were not “not trying.” If it happened, it happened, but if it didn’t that was okay, too. Then, at the last minute, we had decided that we didn’t want to have another one. A week later I found out I was pregnant.

Planning one would be completely different. I had to review this website for one of my jobs the other day and it was an ovulation calendar. I played around with it for fun and thought that if we did decide to have another one then we should try to make it fun (ha ha) and actually look at stuff like that. Do our best to make it exciting and different.

As always, nights are hardest. I miss him a lot. Some days I cry because I have trouble remembering his face and how his weight felt. When I tell people that they start explaining to me about coping mechanisms and how the brain works so I just stop and miss him to myself.

He would have been three months old.

One month anniversary

September 22, 2010

He might want to remain anonymous so I won't use any details, but someone who has been following my blog has offered me a very generous thing-to stay at his B&B for a respite. I leave in a couple of hours. I don't know how well this is going to go over since my agoraphobia has gotten a little worse, but I am going to try. I'm taking my journal, some books, and my medicine. I hope to do a lot of reading, writing, and sleeping.

I cried yesterday when I remembered that it was the one month anniversary. I stood in Toby's room for a long time and looked at his little things and then I remembered, again, that he is not coming back. Sometimes, Sam asks why we can't just go to the hospital to get him and I wonder that, too.

We still don't have the official autopsy report back yet and I am both dreading this and anticipating it. I'm afraid it won't give us any answers, but I am hoping.

For the first two weeks I was in shock. I barely remember what we did. The circus sticks out in my mind a lot. Now, I'm feeling numb and that's a different kind of pain altogether. I can't remember what his little head smelled like. I don't remember what the weight of his felt like. It takes longer to bring his face into my mind. The only image I can clearly see is the one where I found him lying in bed, already turning blue, and that one haunts me. I can't get it out sometimes.

I did something really stupid a few nights ago. I was already feeling sad and upset and I got a not so nice message from my father-in-law. Instead of dealing with it logically, I cut up my forearm and wrist. I've gotten worse cuts from the blackberry bushes but that's not the point. I had sat there all day trying to think get that image of Toby, already dead, out of my mind and the look on Pete's face when he realized that he was dead out of my mind and then that message was the last straw.

Actually, that's not true. The last straw was when Pete's so-called friend had his "best interest" at heart and wrote on my blog that I was "quite disturbed" and a "piece of work" and that I "couldn't even blame it on grief." The father-in-law thing just pushed me over.

I argue with my husband because he claims to be able to deal with these things better than me but sometimes I think it's because he doesn't deal with them at all. He's not getting the nasty text messages because Mom confiscated his phone when they started. But that didn't mean that she and I didn't get them. He didn't get the nasty e-mails either. Aside from losing my child I've been accused of being a bad mother, killing my child, being a bad wife, ruining my husband's future and a variety of other things. So no wonder I'm not coping well. And when I complained about this on Facebook one of my in-laws actually commented and told my friends to "Fuck off" when they were trying to support me. It's all a big mess and really none of it should matter because I lost my baby and that's the only thing that I want to focus on. Pete's friend said that he was so pissed at one of my blog entries that he had to go for a run. Well, we're so sad here that sometimes we forget to eat and on some days I am so agoraphobic that I have to stand inside and reach my arms out as far as I can to collect a package from the UPS man.

We've ordered copies of every picture that we ever took of Toby and that also makes me sad, knowing that there will never be anymore. What we have now is all we will ever have. I could have hundreds of photo books made and put the pictures in different orders and even play with them on Photoshop, but that's still it. There will never be any new ones.

Some of my friends are having a yardsale this weekend to try to raise money for his funeral expenses and a headstone. I don’t even know what to say to them about this. It's so nice. I cried the other day thinking about him not having a headstone and my mom said it would be okay, that he would have one by Christmas. That made me cry harder because his Christmas presents should be toys and clothes-not a headstone.

When we had his picture taken at the hospital they took my email address and for some reason I get thee emails telling me what my baby is going at this time. Like "now at week 11 your baby should be…" only he's not. He's in the ground.

My friend Karen has taken two nights away from her own family this week and stayed with me so that I can have someone to talk to. I want to talk to Pete but it's hard. He says it's because he's always with Sam (which is not entirely true because sometimes I am and sometimes Mom is) or because I'm on the computer (also not entirely true) but what I really think it boils down to is that he just doesn’t want to talk to me and he's making excuses.

Sometimes, and I know this is awful, I envy those people who have children with illnesses because at least they can fight for them. They can run tests and seek treatment options, and sometimes even get better. We had no chance with Toby. We didn't even know anything was wrong. When I went to bed that night he was a healthy, happy, baby. He'd laughed for the first time that day. When I woke up, he was dead. We had no chance to fight for him.