Answers to roundup questions

I tried to find some SPALS mums that live locally by putting a couple of posts up on the Treasures web site, but have had no luck so far. Don't know why I'm so worried about sending them a letter and having it published. Probably because I don't want people who already know me IRL to know that I am not 100%. Something silly in me needing to keep up the facade that I am 100% okay I guess. I don't know. Maybe I'm just a coward.

It occurred to me that I have not yet mentioned Little Bub here. He was the genetically healthy baby boy that I miscarried in 2005 due to complications from a CVS. I learned a big lesson from that pregnancy that I attempted to put to use while I was pregnant with Athena - there is no point in trying to not bond with your little foetus. I tried not to get my hopes up, tried not to bond, tried not to think that pregnancy was going to result in a live birth in the hopes of protecting myself if I had to make a choice to terminate, but at the end of the day, I ended up heartbroken anyway. With Athena (or Chilli Bean as she was known while I was pregnant) I forced myself to stay as positive as I could. It wasn't easy. There were days that I was drowning in a morass of self-pity. But I tried to look to the future - looked for signs of hope at the scans before the amnio instead of not watching for fear of falling in love. Why did I fear falling in love? Love is the best and brightest of the human emotions, but I wasn't afraid of the love, I was afraid of the pain of losing someone I loved.

Anyway, I digress into the past. The reason I'm writing this post is because I saw the list of questions on the round up. I didn't bother blogging for 2 months because I feel the need to have contact with real people where I live, but I'm kind of striking out on that effort. I would post more on SPALS, but there are people there raw with fresh grief who can't stand hearing about other people's living children (not judging, because I well remember how it feels). I feel I've moved on from SPALS, but haven't found a place to move on to yet. Maybe that means I'll start blogging more here.

Anyway, here are my answers:

1. What do you want people to know about the child (or children) you have lost? That Alex existed, and he made me a mother.
2. What names did you give (or plan to give) your children and why? Alexander James. Alexander because we like the name, and James because we thought it went well with Alexander. We called him Zephyr before he was born, because we didn’t want to refer to him as “it”. We hadn’t gotten round to talking about names for our second son, but I liked the name Benjamin. We just call him Little Bub – his foetal nickname. We named our daughter Athena because we wanted her to have a name that was linked to Alex (Greek, starting with an A) but didn’t want it to be overwhelming, like she’s living in his shadow.
3. What rituals or ways of memorializing your children seem to best help you cope with their loss? I talk to my son every night.
4. What are the kindest and/or most helpful things people have said to you? What are the worst? Kindest – letting me honestly talk about my son. The worst was when someone referred to their complication-free birth that resulted in a healthy, breast-feeding son as “traumatic”.
5. Who is your hero? Who helps you make it through the dark days better than anyone else on the planet? I don’t have any heroes. Heroes imply that I want to be just like the person, and I can’t honestly say that I want to be just like anyone else – it’s hard enough to figure out who I am. I just have a few quotes that help me make it through the day, like “Get busy living or get busy dying." (Shawshank Redemption) My daughter gives my life meaning and joy, and my husband is the person I talk to about anything.
6. Is there anything you need to say or want to say but haven't been able to? Can you say it now? I want the people who used to be in my life to know how hurt I was when they disappeared after my son’s death. I want the DHAC mums to know – just for an instant – how lonely and isolating it is when you are the atypical parent. No, I can't say it now. Sometimes there is just no point in saying anything, because wishing understanding does not give it.
7. How are you doing? How are you really doing? I have good days and bad days, like anyone here. I have many lonely days, but I find immense joy in my daughter, and I am struggling to not let my issues affect her negatively.

Some details

I thought about writing to Treasures Magazine, but the more I wrote, the more I wanted to say and I started putting too much of myself into it. So there only remained two options for where to record this stuff - here, or in my journal. My journal has been a life saver when things have gotten rough, but this isn't so private that it needs to remain unseen by anyone, but it's a little too much of myself to send to a magazine. I know, that doesn't really make sense. I want people to read it and understand how a parent of a living child and a dead child feels, but I'm afraid of putting myself out there.

I am the mother of two children. One is a beautiful, healthy, happy nine-month-old girl. The other will always remian a five-month-old boy, as he died over three years ago due to an inherited terminal deletion of the X chromosome. I didn't know I was a carrier until he was five weeks old, and I have a 25% chance of conceiving another affected boy with each pregnancy. I am like first-time mums in that I struggle with solid foods, marvel at my daughter's milestones, and worry about every little thing. Yet, I am not like first time mums. The difference is difficult to define. When my daughter was five months old I spent a week convinced that she was going to die. I kept her angel monitor on and kept the parent's unit with me at night, convinced that I was going to go in and see her blue. I found it difficult to sleep, and the tears came easily. I look at her and am grateful for her existence each and every day - even when she has been up half the night or has been grizzly all day. My son changed the kind of mother I am for the better - and while others in my life moved on, my son lives on in my heart.

I guess one of the main differences between me and the other mums I know with children Athena's age is that I do not desire a break from motherhood. Not even for one day. I was a mother when my son was born. For five months I loved him and attended to his needs. Then I had a break from motherhood. I was a mother with no child, fitting into nobody's world. I didn't fit in with childless couples because I knew what it meant to be a mum, but I didn't fit in with people who had kids because I couldn't kiss my son good-night. I guess I'm afraid that even a short break now will turn into a permanent one - a fear that the other mums I know just don't understand.

Now I fit okay with other people who have kids but not so well with new mums. For one thing, one mother's definition of a "tragic" birth is one where she had a vaginal delivery, healthy baby, happily breastfeeding, but the pain was worse than they thought it would be. To me, that sounds like the ideal. My idea of tragic is having my son taken away from me by emergency C-section, then whisked to the NNU within minutes of his birth - before I could even hold him. Or worse - getting the news that the baby is dead. With Athena, I had a scheduled C-section, struggled to breast feed for over a month before I gave in to the inevitable, and cried for half a day when I finally had to give her formula.

I never thought I would have the complicated feelings I still have though. While it is natural to worry about making mistakes while raising your child, I still fear that I will outlive Athena. I still feel alone, unable to connect with other new mums, and it is difficult to define why. I think some of it has to do with my choice to not go to antenatal classes with Athena. My antenatal class group (with Alex) didn't exactly kick me out, but they went on with their lives while I was living every mum's worse nightmare. My reasons for not doing a class with Athena were complicated. Partly I didn't want to negate my son's existence by going through a class where I already knew the information. Partly I didn't want to face the naivete of the other parents-to-be. Partly I didn't want to scare the bejesus out of any of them. Any because I had a high-risk pregnancy and was facing the possibility of an early delivery, I think I didn't want to believe in the healthy outcome until I heard my daughter scream. That was a beautiful sound. I had hoped to do a Baby and You class and tag onto an antenatal group that way, but it didn't work out. It was only recently that I found out that one antenatal group specifically didn't want to allow additional people to come along. It deeply saddened me, because not everyone comes to parenthood through easy conception and uncomplicated deliveries. It makes me feel that there is no room in the world for the atypical parental experience. I wish I could make those parents understand - just for a moment - so they could open their hearts and minds to other people's experiences. I had hoped to give my daughter the "friends for life" opportunity that I see antenatal groups providing children. I had also hoped to find the support that I see the mothers in my PIN group and Mother's Network group enjoying from their antenatal groups. Antenatal groups are the ones were the bonds are formed and last, whereas the other groups tend to fall apart.

I'm not entirely sure if all of my feelings stem from my experiences as a mother, or if some of it comes from the emotional scars I carry from paedophile father and an inherently selfish mother. We are all, at the end of the day, merely an accumlation of our experiences. I just wish I could find ... the balance, the fit, figure out where I fit in so I can give my daughter the best start possible for her life.

Mother's Day

Happy Mother's Day, Mom, whereever you are. I know you had your own demons to fight, probably some I don't know about. You did the best you could. I wish you could have met your amazing granddaughter.

Opening rant

This seems like such a crazy thing to do. I mean, why would I think that anyone on the Net would be interested in what I have to say? I've just been getting overwhelmed lately, unable to connect with anyone IRL. Normally when I get this frustrated and overwhelmed, I go write in my journal and I feel better. But the biggest thing I'm battling at the moment is feeling like a horrible person. Self-loathing isn't a new concept for me, but this is different somehow. I have people in my life that make me feel worse about myself, and while I know I shouldn't let them get under skin, there they are. Unfortunately I have to have them in my life, much as I would like to go back to not having them a constant presence, because it's important that my daughter Athena have family members in her life.

There is of course a huge backstory to the preamble, but at some stage I guess I'll fill it in. Being the mum of a living child and a dead child has something to do with it; a childhood of sexual abuse has something to do with it; having a dead mother has something to do with it. All of these aspects of me and more mean that I have difficulty connecting with other people. I hate that events in my life control me, and I try to be better, move past it, be a stronger, better, kinder, more open, more empathetic person, get over my son's death, try not to let other people get under my skin, try to move past my fears and my heartache so I don't lose friends, try to let other people in, try to not let my past influence my future, but there are just too many things to control, to do, to try to be, that I feel like I just end up failing in everything.

I would (and probably should) write more, but my little girl needs me. She is the one thing that I don't let anyone question - I do the very best I can by her, and while I know I will make mistakes, I don't seem to have done anything too bad yet. Course, she's only eight months old, so there's plenty of time to inflict my own damage on her, but I hope with every breath in me that it's nothing that will impact her too negatively. I don't want her to have my issues.