Way back a gazillion years ago, my son was born with severe asphyxia due to birth trauma and died at 5 ½ days. He was my second baby, my first was stillborn at nearly 20 weeks due to a variety of pregnancy related issues. I was fortunate when Mark died to have access to a wonderful support group in San Diego called Empty Cradle. I went to the monthly meetings for about a year until I realized all the parents who had started when I did were pregnant again and some had already had a new healthy baby. I was still losing babies and my marriage with it so I started to feel like the group freak. No one else at that time had experienced multiple losses, and I could see eyebrows raising and eyes looking away when we started the meetings by introducing ourselves. People didn’t want to hear my story; in a nutshell, I was scaring people. No one wants to think it could happen again and I was proof that it could . . .
At that time in my life (I was 23), that was cause for a pity party. Whooooo baby, what a pity party! I’ll spare you all of those sordid details today (I’m sure they’ll come forth at another time) but eventually, when I remarried and conceived again, I knew I needed support and I wasn’t going to be pushed away from it because people were frightened of my story. So, I created my own support group that was nationwide and international where I matched parents together by the types of loss they’d had so they could write to each other for mutual support. This was before the internet and people actually wrote snail mail letters. Lo and behold, there were hundreds (probably thousands) of people out there who had had multiple losses, some never able to have healthy babies of their own. They were all feeling like freaks too, and like me, looking for something better than the pity party routine. Just knowing there were other people out there like ourselves was wonderful; we really weren’t freaks and all alone.
I didn’t mention that to toot my own horn. Pen-Parents worked because so many people contributed to making it work; it was a team effort from the beginning. I mention it because it’ an important reminder to me that when my story gets overwhelming for other people, there will always be folks out there with a worse one. And there will always be someone out there looking for support or with support to give that will connect with me. I just have to get out my own way and reach out for it.
In 2006, we had another one of those overwhelming years. My brother Michael (last remaining sibling having lost my brother Mark in 1999) was diagnosed with terminal cancer. He fought it HARD and in the middle of his struggle, my youngest son went through some scares. In February, he was hit in the face with a baseball during practice which broke his sinus cavity and crushed a lot of cartilage in his nose. Two weeks later after making the varsity team, his teammates shaved his head and found a lump on his head by the ear. After a few more doctor visits, we were referred to an ENT mostly for his nose because the pediatrician thought the lump was just a cyst. Long story short, the lump was a tumor and the ENT thought Chad had lymphoma and scheduled him for surgery the next day. It was terrifying especially given my brother’s diagnosis. The surgery went well although the tumor had grown quickly into the shape of a thumb and was invading the neck muscle and ear canal. The diagnosis was a dermoid tumor (benign), most likely remnants of Chad’s twin who died in utero.
It was the second time a doctor thought this child had cancer and it was traumatizing for all of us. I’ve lost five babies; I don’t want to lose any more children! (I know – who does want to lose a child?!) I was trying to move past that while helping my parents prepare to lose their last son and so I was off my game when it came to work (and most things honestly). I was distracted, slower than molasses and my decision making skills were not their best. I was dubbed Martyrbeth during this time – and that’s a story best left unsaid – but there was a lot of pain and sadness attached to that. Why couldn’t people empathize with what I was going through? Had they not lost someone they loved or been traumatized in some way that paralyzed them for a time (and how blessed they were if that was the case)? What kind of society is this that can’t relate to someone grieving or someone going through a difficult time? If you whine about getting ripped off at the grocery store, people jump up in righteous indignation with you. Complain about gas prices or the horror in Somalia and they’re right there with you. Cry about losing a brother and they wonder why in the hell you aren’t over it (in 15 days or less).
Fast forward to 2011 – my mom has died, my dad with early dementia has moved into my house, my husband hasn’t had a paycheck in a year, I need to finish sorting out my dad’s house to put it up for sale and in combining their house with mine, my house looks like a candidate for an episode of Hoarders. I need to find time in there to work to keep my business going. It’s a lot and there are times when it’s overwhelming like Friday night when Dad asked me where my mother was. And now . . . I’m beginning to scare people away again. Some people are avoiding me, and some only respond to the positive tweets and Facebook statuses. A lot of people are staying away from this blog now after loving the first few grief entries. Sorry folks; I can’t always be positive, and it’s not my job to make you feel better right now.
I’m not taking it personally this time and if someone wants to dub me something stupid like Martyrbeth, that’s their prerogative. That kind of thing reflects more on their state of mind than mine. Instead, I’m embracing those who aren’t scared of my story, those who have gone through much worse than I could ever dream of surviving, and those who will take my hand no matter what. I’m not the only one with a lot on her plate, and I’m not sitting here having a pity party. I’m putting one foot in front of the other and doing the best I can. And that’s certainly good enough for now.
So please don’t be afraid of me or my situation . . . and please don’t run away either. Let’s sit together for awhile and just be.