Sunday, March 28, 2010
I've spent this morning at Centrelink submitting an application for our 'bereavement payment'. Nothing like a trip to Centrelink to remind you how well off you are, and how many resources you have. Apparently having a bereavement payment form (which I think you only get from the death of a child) entitles you to jump the queue, because I was seen quickly despite the waiting area being full. Perks, huh.
I was skimming through old emails today to delete some of the 350 in my inbox, and I re-read my new year's letter. I thought "Who the fuck was she? Good on her for being so happy, but who is she?" To me my new year's letter doesn't read as positive, it reads smug and naive. If I met that version of me now I think I'd slap her on the face and tell her to wake up.
And so begins my Holy Week, with Palm Sunday yesterday and the rest of the Holy Week hoo har to come over the next 6 days. This has been a different sort of Lent for me. For a start I skipped Ash Wednesday. Having had Salome's funeral the preceding Friday, I didn't need someone rubbing ashes on my forehead to remind me of the fragility of life, my own smallness and lack of power, the inevitable nature of suffering etc etc. Matt and I started Lent about 2 weeks earlier than most people on the day of Salome's birth.
Secondly, I have been living the triduum in the wrong order every week. Every Wednesday I am aware of one more week passing since Salome's birth, and every Saturday I am very aware of another week passing since Salome's death. It's arse-about: rather than meditating on death to new life (Good Friday to Sunday), I have an unavoidable 3 day meditation of birth to death.
Thirdly, the seat I have always sat in at church is closest to the Station of the Cross pictured above, which is 'Station 4: Jesus meets his mother'. That's the station I feel I am living at the moment, because it portrays the anguish of a mother who is watching her child suffer and die and there is nothing she can do about it. I still wonder who suffered more on that day, Jesus or Mary? A sting in the tail for me is that in the image above there are women comforting Mary and one of the women who stood by Mary on the day of Crucifixion was 'Salome' (Mk 15.40).
So where is my Salome? Is she comforting me? I don't feel her anywhere. I just feel her absence in that terrible baby-shaped hole in my life. What does this image mean to me? That God is in the ones who suffer and the ones left behind, and God offers support even as he takes my child away? (God is always a 'he' to me when I am angry with him). Why would I accept that sort of support? Theological conundrums don't do anything for me these days. All I know is my precious baby is dead, and she's not rising from the tomb on Sunday. She's gone forever. Seems to me there is no meaningful victory over the tomb. What good is it to me that someone else's child allegedly rose from the dead 2000 years ago? Alright for some, not alright for me. If this is God's idea of growth through paradox, he can shove it.
Soundtrack to how I am feeling about Salome includes 'End of the Road' by Boyz to Men. Sing it with me: "Although we've come to the eeeeend of the road, still I caaaaain't let go. It's unatural. You belong to me. I belong to you."
Thursday, March 25, 2010
I went for coffee with my parent's group on Wedn night. I lasted about 90 mins, which is more than I thought I would. It was like going out in fancy dress, leaving the grieving parent persona behind, and having a laugh. I wasn't faking being OK. I don't fake how I am feeling. I honestly feel happier when I am around people, but it only last for so long, and the grieving parent persona comes rolling back in like the tide. The next day I felt really drained.
I saw my counsellor Jane yesterday, and we had a conversation like this:
Jane: I'd like you to take a moment to connect with how your body is feeling.
Me: I don't think that's wise. It won't be good news.
Jane: Do it anyway.
Me: Alright then...... Oh....... Oh dear....... I feel exhausted.
30 mins later it was hard to stand up to leave her office. That's what comes of dismantling functional defence mechanisms! My body numbness had been working fine for me. Jane has the loveliest, gentlest ways of telling me to pull my head in. She told me that I need to have more respect for how the grief is affecting me physically, and that I need to start resting during the day. She told me that for the next 3 months, it is OK to avoid stories of sick babies and children or the death of infants. She suggested I be more conscious of what I am looking at on the net, and I should question whether 'babylost mamma' related sites are going to be helpful, or whether they are just going to pile more stories of dead babies into my head.
So this weekend, I'll be asking Matt to organise us some time to ourselves. I will cancel some social engagements and rent some good DVDs instead. I need to rest, or else I think this pesky sore throat and cough will become an illness. Matt has very little voice still after over a week of being sick.
Happy Earth Hour.
Tuesday, March 23, 2010
This venture was started by a young Perth woman after she and her partner lost a baby. She offers to write the name of any baby who died on the sand of a beach just north of Perth at sunset, take a lovely photo of it and put it on her blog. It's beautiful. I'd recommend watching the short video of her speaking in the 'Our Mission' section. She describes how she gets up to 100 requests for this per day from around the world. She's a mum of 3 young girls herself. She says that even if the weather is perfect, she can only do 30 names per sunset. I don't know how she does it.
I thought we would like a photo like this for Salome, and on Monday night Matt and I spent a while looking at the website. By Tuesday morning we had realised we could easily get this done privately, seeing as we know people in Perth, rather than being one of the 100 people per day who ask Carly to do it for us.
On Tuesday morning I visited an old workplace of mine, and guess what the staff there gave me? A framed photo of Salome's name written in the sand, taken at a local beach at dawn! I was astounded and very touched. I haven't spoken to any of the staff there since the funeral, and they didn't know I was scheming to get a 'sunset' photo done. Serendipity x 1000.
I think we would still like to get a sunset photo done though, because sunsets are different and beautiful, and it would be nice to have a 'name in the sand' photo to remind us of Salome's Perth-based heritage. This is where you Perth-based people come in. If you:
- have a camera,
- have the capacity to get to a beach at sunset without too much stress, and
- have been looking out for an opportunity to 'do something' for us (ie one of the many generous people who have said to us "If there is anything I can do to help, please just let me know")
....then maybe one day you could take a photo of Salome's name written in the sand at sunset and email or post the photo to us. It doesn't need to be tomorrow. Even if in years to come any of you find yourself at a beach at sunset (or sunrise for that matter), I'd love to get a photo of Salome's name in the sand.
On a different note, visiting my old workplace yesterday was confronting. It is a large residential for adults with intellectual disabilities (ID). Driving around I saw several of the people who were my clients when I worked there. Most people who still live there have ID in the severe or profound range, and many have physical impairments or chronic health conditions also. It struck me that in all likelihood that is the life Salome was being offered. Not being in a government-run institution, goodness knows that's not on offer anymore in Australia no matter how much aging exhausted parents beg for it. But to have a severe or profound level ID and to have a range of chronic health conditions that would have required ongoing management and possibly painful intervention. I am not suggesting that life for those people is not worth living or has no meaning. When I worked at that service I hope my work reflected my belief in the value of those clients as people and as members of the community. However, even as a worker employed to interact with the clients there, I had to scratch hard to find a meaning in their life and their suffering. I imagine finding that meaning is even harder for their parents who feel their son or daughter's suffering so intimately and feel so powerless. Being amongst those clients yesterday told me again why Salome might have decided not to proceed with life with us with the body and brain she had. That sounds sterile, but the reality is the health of a person's brain and a person's body can have a huge effect on their quality of life, even with the best medical and family support in the world.
As many of you know, we have a lovely couple who live across the road from us who are an important part of our street. Amongst the many interests and strengths both these people have (including their capacity to get strangers talking) both these people happen to have an intellectual disability. When they got married a few weeks ago, a friend who attended told me it was the happiest wedding she ever attended. Our neighbours live with minimal professional support in their own home. I think of them as having a reasonable quality of life, not because their life mimics mine more closely than someone who has a more severe level impairment, but because they seem to be content and they have a sense of agency in the life they are making for themselves. Yesterday's trip to my old workplace reminded me that in all likelihood this was not what Salome would have had before her. I felt she was sitting on my shoulder as I drove around the site yesterday saying 'I didn't want this. Can you blame me? You know too much about this to be surprised that I didn't want this. You wouldn't want it for me either."
She's right. I wouldn't have wanted that for her, no parent would. It would have been agony seeing her suffer over years and years. I had 2 days of seeing Salome suffer and even that was taking me apart at the seams.
But I did want her in my life, whatever the cost. I did want to be her Mummy. I hope she knew that. I hope I told her enough times for her to hear, even through all that monitoring equipment stuck to her precious little head.
I would have done it, Sweetheart. I would have done it to have you here, and I would have been scared shitless and exhausted and angry and resentful and lonely but in the end I hope I would have found a way to be grateful. I'll never know. I wish you peace, Little One.
Sunday, March 21, 2010
A friend of ours competed in the Sparke Helmore triathlon yesterday, and she did so in memory of Salome. She completed the course, so she swam 500 m, ran 4km, and biked 15 km. I am in awe of this and always have been in awe of anyone who does triathlon / marathon stuff. I am incredibly touched that our friend dedicated her huge achievement to Salome. I don't understand why it means so much to me that our friend did this, but it does.
We went to an annual family event on the weekend, in a town I have visited many times a year for most of our life. Strange to be somewhere so familiar and to feel utterly lost. I saw people there I only see once a year, who are mostly friends of my brother's and his partner. Several people sought me out to tell me how sad they were to hear about Salome's death, and I was really touched to know that people from so far away have been thinking about Matt and I, praying for us and crying for us. It was good to see A and M have people supporting them with the loss of their neice. I received so much kindness on the weekend, and I received it passively because I'm really tired, I'm muddleheaded, I find chat impossible and I am living in a bubble. Now I am also a bit sick.I found this blog's greatest fan over the weekend. One of my aunts has become an avid reader, and she even flicks bits of posts on to other people so she then has someone to debrief with after she reads it. She told me she has ditched Home and Away in favour of my blog, and that if she comes home from work and there is no new post she is very disappointed. I haven't laughed so hard for 7 weeks! Her son even apologies to me for not reading the blog, because he finds it a bit depressing! Hillarious! Just for the record, I am absolutley not insulted if you don't read this blog for a while or don't read it ever. It might sound silly, but I want to assure you all that there is nothing disloyal in taking a break from hearing/reading/thinking about Salome's death for a while. Please don't think that would upset me. What is going on here is our house is hard slog, and if we there was any way we could have a break from it I can assure you we would! If I was in your position, I probably wouldn't read this blog very often because I have a 'trauma sponge' streak to me that needs to be managed. I really feel that when we here in this house start to "recover" (?) and start to inch our way back in to everyday life, that will be absolutely fine by Salome. I am sure that gorgeous little baby would not want me to feel like I am not grieving her properly or not grieving her enough, and she would want us to reconnect with all the life-giving things around us. So I am telling you all too that we feel very loved and supported, and it's totally OK if you don't want to read this blog. All I'd ask is that if you have been reading this blog and then I talk to you and I start to tell you about something you have already read here, just tell me that you've already read about it so I know not to repeat myself by telling you. Am I the only blogger to worry about that?
Wednesday, March 17, 2010
- It's little Hayely's funeral tomorrow arvo. I won't say I'll be praying for them, because that would involve being in communication with God who i am still incommunicardo with, but I will be thinking of them and probably wanting to throw up when I think about what they are going through.
- Matt is still home sick and not getting better.
- The tree out the front of our house is very dead. I don't mind it now it's dead. It feels right to have a baby dead thing out the front of our house. It's like our house has a black armband on. Our friends are sourcing us another tree of the same type, and we have found a place to plant it out the back.
- I went to the optomotrist, and he explained why it is that grief and stress can produce eye problems exactly like what I've been experiencing. Apparently people often get these kind of visual problems also when they are adjusting their dose of SSRI antidepressants (bloody seretonin). I'm following his advice and I am having a lot less difficulty with my vision.
- X and I produced our first school diorama this week depicting a living thing and it's basics needs for survival, and we did a superb job, as can be seen from the photo up the top of this post. Obviously we don't need to tell you what it is, but if you'd like to marvel at the accuracy of our depiction, you can refer to this:
Tuesday, March 16, 2010
Neither Matt or I slept well, and by morning I had decided that unless I could get some reassurance from the school staff, it wasn't worth the anxiety it would cause me to send X to school today. I think being in week 6 to 12 means we get to do whatever the hell we want to manage our emotional cocktail, and a kindy kid having a day off school is neither here nor there. Also, we had thought X didn't know about Haley's death, but at 6 am today she got into bed with us and started telling us about Haley's death. The school chaplain had taken out of class yesterday to tell her, knowing that there was going to be talk around the playground about "So and So's little sister died". So X was a bit concerned about it, and started saying she didn't want to go to school today.
I went to the school alone at 8.30 am and spoke to the Chaplain. She told me as far as she knew, the school had not been contacted by public health and no concerns about infection control had been communicated to the school. I thought if there had been any chance of it being meningococcal, the school community would know about it by now, so that reassured me enough to keep my anxiety levels down to managable levels. X still didn't want to go to school, but I got her dressed, took her out for coffee, and then dropped her off at school after telling her if she wanted to come home at any point, just tell the staff to give me a call and I would come get her. She had a good day.
Our school only has about 180 students. What are the odds of having 2 little girls die within 7 weeks within the school community? The Chaplain looked drained today when I saw her. How awful for the school to be supporting another family through another funeral so soon. And poor X doesn't need more chat around her of little girls' funerals and how sad it is to lose a sister. Also, it is likely that little Haley attended the same childcare as K does, although K says she didn't know her so maybe she was there on different days.
And Haley's poor family.... As much as I have been bitching about how hard week 6 to 12 is, there is NO WAY I would want to be back where they are, with the shock and the horror, and with the funeral in front of them and all of those big decisions to make, at a time when they don't know what day of the week it is. Doesn't it make you sick to think of what they must be going through.
One day Haley's Mum and I might catch up and be of support to each other, but I would much rather have met her as just 2 mums of kids at our school, rather than 2 mums of kids at our school who had a daughter die in first term 2010. The Chaplain thinks it might be useful for Haley's big sister to know that there is another girl in her school who has just lost a little sister (X), and she might hook the 2 of them up some time down the track. X told me this arvo that she thinks Salome and Haley are friends now in heaven, and she intends to tell Haley's big sister that next time she sees her.
It's hard knowing there is another family in our social sphere who is in such deep pain. I won't go the funeral, but I did make some suggestions to the Chaplain for how the school could contribute to the funeral that were appreciated, so I feel good about that.
For Haley's parents: holding you in the Light, and crying tears for you. It's painful beyond words and beyond limits, but I've been told by trustworthy people that it won't always hurt like this.
For Haley: Little One, wishing you peace of eternal rest, and crying tears for the rest of the life you didn't have. Give Salome a cuddle for me, and send some strength to your poor parents. It's very hard for us Big People to let you Little Ones go, so be patient with us parents, because when you leave us it hurts a lot and we get a very big sad feeling, bigger than the whole world.
To sleep. Matt and I are very tired, and Matt was home sick today. I was calling him my "green eyed, green shirted flu-infected comfort eater" today. He didn't think that was funny.
Sunday, March 14, 2010
Thursday, March 11, 2010
Also, I got blood test results back yesterday and my beta HCG results are negative, indicating no return of the partial molar, which is good news.
Also, my eyes were irritated yesterday and in the arvo K came down with roaring conjunctivitis, so here is hoping my eye problems lately have just been emerging conjunctivitis.
Also, we have a collection of tuppleware and crockery here from when people have very generously bought us food over the last few months. Good People of Newcastle, if you think some of this stuff might be yours, please let us know and we will try to return it to you.
Wednesday, March 10, 2010
Emotionally, a sense of vastness, barrenness, cold, aloneness. I think the best word would be anguish. More unpleasant thoughts about what is happening to Salome's body now, and anger at my own body for betraying me so badly and not protecting my baby. Sleep is OK, but more bad dreams. Less capacity for keeping a lid on my anxiety about girl's safety and reign in my protective behaviour about that.
I told counsellor Jane all this yesterday, and she said 'Welcome to week 6." My paraphrase on what she said:
- week 6 to 12 will probably be the worst weeks of your life (I would have find that hard to believe after the 6 weeks we have just had, had I not been experiencing it now).
- listen to your body. Jaw being difficult to move may simply mean stop talking so much.
- in terms of normal expectations you or others place on you, all bets are off. Keep plodding, but expect no more than plodding. Priority is staying connected to Matt and girls, and maintain basic routines for girls.
So starting to make less phone calls, because I can only do so much talking, and there needs to be fuel in the tank when the girls and Matt get home. I'll be doing more emailing and texting.
We're outsourcing a lot of stuff. Getting a cleaner to come for a while, starting today. Getting my eyes checked next week.
Later when I am doing better i will write about K's astounding performance at swimming yesterday. In short, she smashed it. She did everything all the other kids did, jumping in getting her face wet, learning to swim laps with a kickboard, no crying, the bravest girl in the whole world. I was soooo proud of her. She blew me away. I'm calling her 'Ego of Steel' for a while. Very inspiring.
Just to clarify I don't want anyone reading this to be worried about me. Here are some reasons not to be worried, and why I am not worried about me:
- I feel awful, but I don't feel overwhelmed.
- I have heaps of support and I am using it when I need to. When I want company I go get it, when I want to talk I make a phone call.
- I am confident I will not be feeling like this by mid May. I won't feel great by mid May but I won't feel like this. I am not depressed, I am grieving.
- I laughed at K in the pool yesterday and I felt happy.
- I can always move the muscles in my face when I want to. It's not like I am verging on catatonic or anything.
So don't worry.
Sunday, March 7, 2010
It didn't last long. On Saturday morning we got up at 6.30 am and Matt found the tree already uprooted and lying on the grass, with it's stake next to it. I felt sick seeing that tree. I think Matt felt more angry. He talked to a few neighbours about what had happened, and Tanya (next door) urged him to plant it in again, even though it only had about a 1 /3 of it's root structure left. Matt did an early morning run to Bunnings. By the time he got back, the neighbours had talked to a few more neighbours, and a couple from across the road came over to help Matt build a cage around the tree with chicken wire and 4 stronger stakes, with some bits of sharp wire added to hurt anyone who tries to rip a stake or the tree out. It took them ages. I think this incident has touched a vigilante nerve in our quiet little street. We don't know most people on this block, but word has got around that our baby died, and people don't want to intrude but they are keen to help. It was lovely to get support like that, unasked, at 8.30 am on a Saturday.
However, the tree is dying. Saturday was hot. We went to our friends' for lunch and came back, I went to the cemetery and came back, and the tree looked worse by the hour. On Sunday it looked just as bad, and today is no better.
I am finding it upsetting. It's hard to know whether the tree is dead yet, but I think it soon will be (even typing that makes me feel sick, it's too close to the bone). To have something sort of connected to Salome, dying in front of our eyes over a few days, and it's so wrapped up in stakes and wire we can't get to the tree at all. I see it every time I come home or go out. We don't need to be forced to watch something die at the moment. It feels yuck.
I'm going to source another one of these trees, and we will plant the live one as soon as we can. When I walk past the dead / dying one, I tell myself "It's just a tree. It's not our baby. It's a tree."
My pleasant distraction for the weekend was a videoclip I saw on Saturday for a song called 'This Too Shall Pass' by OK Go. When they sing 'Let it go, this too shall pass" I found it strangely comforting. I thought later I hadn't liked a videoclip that much since that one with the 4 blokes dancing on the treadmills. It turns out it's the same band. The girls and I have watched it a few times, and they like trying to spot the instruments.
I think this has been done in one take?
There is another excellent clip for this song at:
One take from one camera again? I love it.
Saturday, March 6, 2010
Yesterday I went to the cemetery to say hello, taking K with me (X does not want to go, fair enough). I said to Salome "I know you aren't here, but I have nowhere else to go". People refer to us as having 'lost a baby', but I am more lost than Salome is. She has moved on, but I am untethered.
Yesterday was 5 weeks since she died. The pain is enormous and unfortunately less sporadic, like labour pains intensifying and becoming more frequent. I remember reading in some McKissock resource that weeks 5 and 6 after a major loss tends to be hard, partly because crying stops giving a sense of relief. Crying usually brings a sense of relief because it triggers a release of endorphins (or is it seretonin?), but when a person cries a lot in a short amount of time, the body can't produce enough endorphins to keep up with demand. Apparently, this often happens in week 5 or 6.
This was the filter through which I heard this morning's sermon at Mass. Fr Peter is a good man, and he is not an idiot, but his theology this morning was frustrating to hear. He was speaking about providence. He reatierated Jesus' teaching that calamities and disasters are not God's punishment, and God's providence is not simply a matter of God diverting suffering from good people onto bad. Fr Peter said disasters and calamities were also a form of God's providence, providing an invitation to repentence.
The death our baby has been a disaster for us, a very localised disaster but still our world is on its head. What does this theology tell me? Did God bring about Salome's suffering and death in order to offer Matt and I a brutal invitation to repentence? If so, is there not a risk that I would think that if I had been a "better' Christian before hand, if I had only been nicer and tried harder, if I had not been in need of such a ruthless reminder from God, then Salome would not have suffered and died? Would God make a newborn baby suffer for 2 1/2 days just to get her mother's attention and subservience? This is God as the Cosmic Sadist that CS Lewis wrote about. I have never belived in a God like this. I would go further and say God is not like this. God and I may not be on speaking terms, but that doesn't mean I've forgotten who God really is. As angry and hurt as I am even I can recognise an inaccurate description of the God I used to be in relationship with.
The purpose of suffering and the role of God to suffering is a big fat knot that everyone on any kind a spiritual path has to struggle with. Salome's death has bought these issues into sharp relief for us. I remember in the week before the funeral, Matt was looking through his theological and spiritual books (of which he has many many as a result of his masters) looking for quotes to use in the funeral. I found him one day tossing his precious theological books onto the floor one by one, saying "Nothin'..... Nothin'..... None of these books have anything to say to me about our dead baby". This is the new litmus test for theology for me: it has to make sense in NICU. It has to hold up in the midst of rows of tiny suffering babies and grieving families. And it has to make sense in front of Salome's tiny white coffin. If it doesn't speak to this experience, it's out.
Wednesday, March 3, 2010
I've just been reading this and crying. I'm glad it's not as humid now and the temp has dropped. Crying is not as physically uncomfortable as it was a few weeks ago.
It's been a hard few days, including the following:
- Trip to shopping mall with Xanthe. We got seperated, and I came as close as I've ever come to a panic attack. All ended OK, although X didn't like seeing me like that, and it took a while for me to calm down enough to drive the car home.
- Appointment with Obstetrician: We spent an hour with our Obst on Monday night. Just being back in her office was upsetting. I am taking in more of what she is saying to us about what happened to Salome, and that's not easy. We talked about grief, about my health, about the future, and about the curse of clarity with hindsight. I didn't realise until then that our Obst also has a reasonable slog of experience in neonatal care.
- K's swimming lesson: I thought I'd channel my anxiety about the girl's safety into something useful and get K into long-overdue swimming lessons. She didn't want to go. She cried, howled, sobbed and screamed for all but the last 5 mins of the lesson. Well-meaning staff and parents came to sit with me and say "It's always awful when they do this. She'll get used to it. I remember when we first bought our little boy here and he screamed the place down... etc etc". I felt like shouting "You don't understand. My other daughter JUST DIED!!!!" At present, I have no tolerance for watching a daughter being distressed and not being able to get to her or comfort her. The only reason I will be taking K back next week and forcing her in is that I think it's not safe to have kids in Newie who can't swim. The social life here is really beach / pool focused. The girls need to be able to swim.
- Back to play group yesterday: This was my first time back since Salome died. Lovely people, but a lot of new people, and I don't like meeting new people at the moment. I'd give myself about 2 /10 for chit chat skills. Of course there were babies there too. I was going OK until we had group time at the end and did a rousing rendition of 'Miss Polly had a Dolly'. But as I said to the staff member who I talked to after the event, if I can't anticipate what my triggers are going to be for what's going to upset me, how can anyone else be expected to anticipate that? The triggers for me getting upset could be seeing pregnant women or small babies, and I can't avoid those triggers unless I don't leave the house. If I get upset at playgroup, all that's going to happen is that I will cry, and I am OK with that. I don't want people to feel they have to guess what will upset me. If I get upset, I get upset.
This morning there has been a lot of tears. A lot. I am burning a candle to remind me that Salome is with me in one way, but a burning candle is no substitute for a baby.
Here is something that makes me laugh though. Billy Connolly live in New York in 2005, and his comments on opera, which I agree with.