Monday 1st March: At home alone

Monday morning, I'm at home alone and doing OK so far. In fact, I think I am starting to need this time alone, or else I find myself trying to dodge the grief by keeping busy. Matt worked a full week last week and expects to do it again this week. I don't know how he is doing that, he is amazing. I can spend up to 2 hours a day with people before I really need a break.

K's party went well, and spending the money on a kiddie entertainer was worth it. However, there was a distinct baby-shaped hole in the event, and I felt Salome's absence very sharply. K has been talking about that party for about 6 months, and I always wondered how we would run a good party for her with a brand new baby in our lives. As it was, the party was distressingly easy to pull together and I was unfortunately able to chat with people and move around all morning, unencumbered by breast feeding or settling Salome. I lit a candle and kept it on the food table for the duration, to remind me that Salome was present in her own way, and to acknowledge her still being in our family and in our hearts.

I did enjoy the party though. I do feel good being around people when I am around them. I try not to fake how I am feeling, and if I am feeling shit I just leave. This blog probably doesn't give and accurate portrayal of what life is like for me hour to hour. It's not like I am overwhelmed or crying most of the time. Some days there are hardly any tears at all. Sometimes I can go for big blocks of time when I don't think about Salome (having the activity and structure of having K and X around is good for that). Sometimes I feel OK for hours. Last night I started watching 'You Don't Mess With the Zohan" and was laughing my head off. Other times I feel empty, other times anxious. One of my favourite quotes from CS Lewis' "A Grief Observed" is "No-one ever told me grief feels so much like fear", and I really get that now. Other times I feel a huge sadness, and I just ache for Salome. I'm learning that there is a huge range of things I can do while crying. I can clean a bathroom, walk to the shops, dress the kids, and pack lunches while crying. Certainly can write a blog while crying, no problems.

Mum left yesterday. I was nervous about her leaving, but if she'd stayed longer I would have been even more nervous about her leaving, so the timing was good. She has done a huge amount over the last week to keep the household functioning and to settle the girls. We've all missed her since she left. X has been a been worried over the last few days about whether she might get sick and die too, and she is monitoring her own body and getting a bit freaked out by normal physiological stuff. We have decided to give her a break from the kiddie books we have about death and dying. K told me today she wanted a short day at childcare because she doesn't like being away from her sister so long and she misses Nanni today. No problems. K's birthday party has been a positive distraction for both X and K over the last few weeks, so it's not suprising they are feeling flat after it. Matt's going to laugh when he reads that last sentence and say "Yeah right it was a distraction for The GIRLS and it's THE GIRLS who feel a bit flat now that's it's over..." But I don't feel flat because I am already planning my set list for Woolstock in a few weeks.

Matt also shakes his head in disbelief when he finds me looking at caskets and coffins on the net. Each to their own in this shitty quagmire of grief, I say. Here's a good Australian site about eco friendly coffins and funerals:

www.onearth.com.au

I was also talking to a few people on the weekend about the Order of the Eastern Star. Here is the wikipedia entry site:

http://en.wikipedia.org/wiki/Order_of_the_Eastern_Star

I have read it several times I am still none the wiser. What a facsinating organisation.

Thank you all for your support. I am still not getting around to returning all the texts, phone calls, and emails but it does really help to receive them.

Friday Feb 26th: A poem for us

I had my first session with a counsellor yesterday. Her name is Jane. I like her, and I think we're going to get along fine. Jane and I see eye to eye on some important things and I like her style. One hour with Jane snapped me like a twig and made me no good for anything else, but that's OK.

Here is a beautiful poem we just received, written for us by a friend. It made me cry. Thank you to the author.

This is the wordless cry
The one you hope never
never to need
Which can't be enough
comes out all wrong
And cannot bring life out of death
Ragged
Wrenched
With no resting place
This is the wordless cry
Sent with love
For all your three girls
And for you.

Thurs 25th Feb Waiting on a phone call

Last night K took ages to go to sleep. It had been an exciting day for her, with all the birthday hoohar. Matt and I tried not to lose our patience with her, as she tossed, turned, chatted, and played with her new toys on the sly. I sat with her for about 30 mins and still she would not keep her eyes closed, even though she was obviously very tired. Eventually at 10 pm she said "I am waiting for Salome to phone me up and sing me happy birthday".

It broke my heart (whatever bits of it are left) and it still breaks my heart to type it today. Fuck it hurts. From one little baby dying, there are so many losses to grieve.

I found last night's dinner hard. I found it hard to sing happy birthday. It was very obvious to me that there was someone missing from the table. Matt and I will come up with a ritual, like a burning candle, to include Salome in important family events in the future.

K eventually fell asleep in our bed with us. She is tired and teary today. So am I.

Wedn 24th Feb: surfing the net and Judith Lucy

I have been looking around the net for blog sites about neonatal death, and there are hundreds of them out there. Some of the resources on the sites are useful, but I don't find other people's stories of such griefs helpful at the moment. I have a hard enough time dealing my my own story, let alone other people's. I expect this will change and at some point I will want to talk more to people who have been through something similar.

It is 4 weeks since Salome was born. I wonder when I will stop marking the days by how long since she was born, how long since she died. In some of the other blogs, women (they seem to be almost all women who write them) are counting the days since their baby died, even 10 or so years down the track. I don't want to be like that: I don't want that to be Salome's legacy in my life. I know I will never 'get over' this, but neither do I want it be consumed by grief or defined by it in years from now.
Here are some things I have regularly said to clients in the past, which are now coming back to bite me in the bum:

1. Grief is not an emotion. It is a process. Grief can have any number of emotional flavours. Grief can be sad flavoured, angry flavoured, shame flavoured etc.
2. The number of tears is no indicator of the depth of grief, nor of the depth of love for the person who has been lost.

I am reminding myself of these neat little phrases often. I think I still believe them. But can I walk the walk?

Today is K's birthday. I am trying to make the day enjoyable for her. Thank goodness my Mum is here to make K's day special.

Here is a quote from the book The Lucy Family Alphabet by Judith Lucy (2008, Viking Press):

"There is always so much to do when someone dies. After Dad died of his heart attack, Mum and I stayed at [my brother] Niall's and filled our days with death related tasks. Choosing a coffin is the most unusual piece of shopping I've done. It's not often that you spend that amount of money on an object knowing it will never give any pleasure. There is no satisfation to be had from your choice - you're not going to flick through the catalogue and say "Bingo! That's the one. That's the casket that will really bring out the best in the corpse". The only party the coffin seems to benefit is the people selling it to you. When I go, just bury me in a cardboard box or a wine barrel (if you want to be vaguely relevant), and do not, at any point, say 'It's what she would have wanted", unless you specifically know that it is. I wouldn't have had a clue what Dad would have wanted- still to be alive would have been my guess. And while I'm about it, don't send any sympathy cards to my loved ones with shells, seagulls, or the ocean on them. I'll be dead, I won't have gone to the beach."

If like Judith Lucy you are interested in being buried in a cardboard box, see these eco-friendly options. I like the wicker basket one in the 'natural' section and the avid gardener one in the 'pasttimes' section.

http://www.creativecoffins.com/

Resource Book

My favourite resource book at the moment is:

When Dinosaurs Die: A Guide to Understanding Death by Laurie Kransy Brown and Marc Brown.

I would say it is pitched at 5 to 7 year olds. It's informative, honest but also warm. X got a lot out of it, but K not so much.

A poem by Ezra Pound

Thank you Jane for sending me this beautiful poem:

A Girl

The tree has entered my hands
The sap has ascended my arms,
The tree has grown in my breast-
Downward,
The branches grow out of me, like arms.

Tree you are,
Moss you are,
You are violets with wind above them.
A child- so high - you are,
And all this is folly to the world.

Tuesday Feb 23rd: Sally the Bear is recovering

Some good news from our place: K's beloved teddy bear Sally is out of NICU and getting better. For weeks now K has been telling us that Sally needs to be looked after and she is very sick and might die. K has been keeping Sally in a box she turned into a hospital bed. and telling us she has tubes all over her face. At times, K wouldn't leave Sally's side to come up for meals, because Sally "was too sick and might die". This morning, K suddenly said "Sally got better. Hurray!" Sally is apparently still vomiting, but is much better than she was. Dora Doll, however, is still in 'hospital' but doesn't need to be constantly monitored

I am happy about this because it suggests to me that she is moving through her grief in her own way, and on some level she has registered that if a baby gets sick it doesn't always end in death. For my own sake, I am happy because the NICU-related play was gruelling for me to be around.

Monday 22nd Feb

We had a night off on Friday night. X and K had a sleep-over at the house of some very generous friends, and Matt and I went to a hotel.

Advantages of this:

1. The hotel was clean and there were no chores to do.
   
2. We could start and end conversations when we wanted.
   
3. We went to sleep when we wanted and got up when we wanted.
   

Disadvantages

1. X and K reported they had a great time. But when we showed up to get them X started hitting, biting, and kicking Matt. When we got home she really let us have it, throwing things, shouting, more biting and hitting. She later told us she felt very sad and scared when she had to go to sleep in a place where neither of us were, and we did the wrong thing to leave her there. Then she sobbed and sobbed for ages. In retrospect it was too soon for this for her. Last time she had a sleep-over anywhere was 2 nights after Salome was born, and then when she woke up the next morning at her friends' house she was driven to the hospital at 7 am and told her sister was dead.
   
2. I was anxious about X and K's safety overnight. There is no logic to this: X and K were in safer hands with our friends than they would have been with us. I just get a low-level anxiety when the girls aren't with me. So I slept worse in the fancy shmancy hotel than I would have at home. Matt asked me last week what I was anxious about RE the girls, and I said "We live in a world where any of our children can be taken from us at any moment, one way or another. How come you're NOT anxious?"
   
3. It was no break from the grief. We were in a pretty hotel, with dinner out and good wine, but our daughter was still dead. I still watched the sun come up crying, like I would do anywhere else. Same shit, nicer location.
   

On Saturday arvo I suddenly wanted to go to the cemetery to visit where Salome is buried. Matt didn't want to come but he was worried I wouldn't be in a fit state to drive back, so we all went. X told us she didn't want to go, and if she had to she did not want to even look at the grave. Off we drove into the heat. The girls scurried about the graves. I spent the time reining them in and telling them not to touch things on other people's graves. I got no time to sit at Salome's grave. It is a beautiful place. Matt and I felt that Salome really isn't there in any spiritual sense. X and K asked questions about what Salome's body would look like. X wanted to dig the coffin up to have a look.

Sunday, back to church so I can scowl and weep with company. It's not an unpleasant experience all up. I took K with me, and she was happy to tell everyone that her cradle cap is gone.

Mum has come up for a few days, which I think we really needed. Matt has gone to work today and is attempting to work a full day. With Mum here he can pace himself according to his energy levels, and not have to worry about if I'm OK at home alone.

K's Salome-related play has changed again. Last Friday she had her teddies and toys set out in rows and was singing songs. She told us they were having a funeral. It seems that some the major events come out in her play 1 week after they occur. K has had trouble getting to sleep since Salome's death. Since she and X started sharing a room, X has always gone to sleep first and then K up to an hour later. K tells us she feels lonely when X goes to sleep now, and she tries to keep X awake to avoid this. If we separate them K starts crying and saying she is sad because our baby died, and doesn't want to be by herself at night time.

X told me yesterday "I wanted to be the big sister of 2 people. Now I'm only the big sister of one person and it's not fair." A lot more tears from her.

There is a terrible sense of emptiness. The sadness is more transient, and almost a relief when it's present. The emptiness is constant, gnawing, draining.

 

 

 

Friday 19th Feb

Fuckety fuckety fuck fuck FUCK!!!! IT'S FUCKED! I had a moment of stepping back from the immediate concerns today and realising how fucked it all is. Everything to do with this 'my daughter has died' situation is soooooooo fucked. FUCKED I TELL YOU! FUUUUUUUUUCKED!!

The awful feeling I get first thing in the morning when I wake and remember Salome is dead is fucked. The anxious /dread feeling I then get as it gets closer to 6.55 am (the time of day she was declared dead, when I half want the moment to pass because it is awful coming up to it but then i don't want it to pass because then I am one more day away from seeing her gorgeous little face) is fucked. Seeing Matt so distressed and exhausted is fucked. Hearing X reassure me that "Salome is still in bed in heaven and she hasn't got up yet, but when she does Nanna or someone else will breastfeed her" is fucked. Having K sit on my lap and poke my still-swollen tummy and say "Are you sure our baby isn't still in there?" is fucked...... I could go on, as you could imagine. A litany of fuckedness.

Meanwhile it is K's birthday next Wednesday, and we need to make it a celebration for all of us. Today I will look at hiring people to attend. I can find clowns for hire, I can find magicians for hire, even reptiles, but nowhere can I find balanced happy parental figures for hire. I think I'll go with the reptiles.

About the blog title

'A Grief Observed' was the title of a book written by CS Lewis after the death of his wife Helen from cancer. I read it over 15 years ago and remember it as a gutsy honest discourse, tracking the course of his grief and the consequences of his grief on his faith. Below are 2 quotes:

"Oh, God, God, why did you take such trouble to force this creature out of its shell, if it's now doomed to crawl back to be sucked back into it. Where is God? What pitiable cant to say, "She will live forever in my memory." Live! That is exactly what she won't do. What's left? A corpse, a memory, a ghost. Three more ways of spelling the word 'dead'!"

"Talk to me about the truth of religion and I'll listen gladly. Talk to me about the duty of religion and I'll listen submissively. But don't come talking to me about the consolation of religion or I shall suspect that you don't understand. The conclusion is not "So there's no God, after all" but "So this is what God is really like, the Cosmic Sadist. The spiteful imbecile?"

Thurs 18th Feb: Pulling the bandaid off quick Pt 1

Matt has gone to work today. He is aiming to do 4 hours to dip his toe in the water. I have been nervous about how I would go here at home by myself (I don't like to be alone at the moment). Matt accepts I don't like being alone, but solitude is so consoling for him that I think sometimes he doesn't understand why I get nervous about it. I didn't realise until 7.45 am that he was planning to leave at 8.10 am, so if effect he pulled the bandaid off quick which wasn't a bad thing.

I have now been home alone for 31 minutes after dropped X off at school. I got the first cry of the day over and done with (always a relief). I have a back-up plan of a friend's place I can go to this morning if I want. I am thinking through the morning in 20 min intervals. I feel really tired but I don't think I can rest here alone. I visited the local SIDS and Kids office a few days ago, and they showed me their drop-in centre for bereaved parents, which I guess is our new homie hangout. They said "This is the couch that Mums sometimes come in to sleep on". I understand that now.

Good thing our house looks like a bomb hit it, and I can fill in blocks of time doing essential busywork like cleaning the bathroom. Hurruh.

I miss that Baby Girl. I miss her I miss her I miss her. She was such a gorgeous fat little thing. Now she's so far away from her Mummy and Daddy.......

52 mins now, and doing OK so far. Time for a cup of tea.

About Salome’s name

SALOME Pronounced SA-lo-mae (English) 

 

From an Aramaic name which was related to the Hebrew word שָׁלוֹם (shalom) meaning "peace" or "peaceful one". According to the historian Josephus this was the name of the daughter of Herodias (the consort of Herod Antipas, the tetrarch of Galilee). In the New Testament, though a specific name is not given, it was a daughter of Herodias who danced for Herod and was rewarded with the head of John the Baptist, and thus Salome and the dancer have traditionally been equated. As a Christian given name, Salome has been in occasional use since the Protestant Reformation. This was due to a second person of this name in the New Testament: Mary Salome, one of the women who witnessed the crucifixion and later discovered that Jesus' tomb was empty.

 

Ada-Kate was one of Matt's father's grandmothers. Matt remembers Ada-Kate as being a very lively and warm person.

Still no decision on who to give donations to

We asked people to consider donating money to a charity in Salome's memory rather than bringing flowers to her funeral. However, we are still thinking about which charity to nominate. 3 we are thinking of are

1. A local family who not only lost a baby 6 days before Salome was born, but also lost their mother, when a 29 year old woman (Amber Compton) died of heart problems, leaving 3 other little kiddies behind:

http://www.portstephensexaminer.com.au/news/local/news/general/fundraiser-to-assist-amber-comptons-family/1735776.aspx

To make donations to this family, go in to a branch of the Greater Building Society and deposit into account no. 016 717 339 70. Please ask staff to attach a note saying "For Compton Family".

1. SIDS and Kids, who we will be receiving services from in the future.
   

http://www.sidsandkids.org/index.html

1. Stepping Stones Nigeria, who work with children who are tortured and often murdered (buried alive, poisoned, covered in acid) because they are denounced as witches, usually by "Christian" preachers:

http://www.steppingstonesnigeria.org/node/18

We'll try to make a decision within a week.

Sophia x

Wedn 17th February, 9 am

Today I feel hit-by-a-truck tired. X is off to school as usual. K and I were going to go to a play date at a park down on the Lake, but I can't face all the people that will be there. Last time I saw those people was a week before Salome was born, and I don't want to have That Conversation today. It goes "You look fantastic! What did you have? Where's your baby?" Instead Matt, K and myself might go to a friend's place for a play date / lunch.

We had a chaplain from X's school come around yesterday. X has had some very frank discussions with this woman, and I am happy that there is someone outside our household that X can talk to about what is going on and what she thinks and feels about it.

K's Salome-related play has reduced, and I am grateful for that, because her play was so accurate it was like groundhog day for me. Her beloved teddy is still in the same box she was in when it was a pretend NICU bed, but now the box is sometimes a camping bed or a car. K had stored up a lot of big sister caring-for-the-baby energy before Salome's birth, and that energy has got to go somewhere. I know the feeling.

A new psalm just for us

A friend of ours who is completing theological training composed a new psalm for us when she heard about Salome's death. She wrote:

"The Hebrews often didn't put it plainly enough:

v.1 God you are an idiot,
God you are an idiot,
God you are an idiot,
God you are an idiot!
 
v.2 God you are a bastard x3
v.3 God why did you do this? x3
v.4 God please help me though it x3"

I like it. I'm not up to v. 4 yet obviously.

My eulogy for Salome

Salome's Eulogy

Given by Sophia at her funeral on 12^th February 2010

This will not be a good eulogy. A good eulogy is about the deceased and not the speaker, but Matt and I didn't get a chance to know our daughter Salome. Some of you might think I'm mad for trying to give a eulogy today. But there wasn't much parenting I could do for Salome in her short life, so I want to try to do this for her.

Salome was born in very poor health due mainly to meconian aspiration syndrome, and she lived her 2 ½ days in the Neonatal Intensive Care Unit. She had tubes down her throat the whole time and she never drank or ate. Right after she was born, she looked at me 3 times, and after that her eyes didn't open again. We didn't get to hold her right until just before she died. She never felt dirt beneath her feet or the sun on her face. This is vastly different from the life Matt and I wanted to offer her. We are left grieving not only the life Salome never had, but also the life she did have.

If Salome had lived, she may have had a moderate to severe intellectual impairment, she may have had cerebral palsy, she may have had damage to her liver and kidneys. No-one will ever know what sort of life she would have had, and what challenges and strengths she would have had. We will never know how capable we would have been of parenting a child with disabilities. We were not given that privilege or that cross.

Last Lent, I sat in this church and led a reflection on the Stations of the Cross, which is a ritual some Christians practice reflecting on the facets of suffering Jesus endured in the 24 hours leading up to his death. I talked about the Stations of the Cross as an experience of a mother losing a child, and about how the grief that comes from the loss of a child has so many different parts. Some of you might remember I talked as if I knew what I was saying. Now here I am, and I can tell you that in reality, when you lose a child there are far more than just 14 stations to grieve and to live. Some of the experiences we have had in the last 2 weeks would turn your toes. And in some ways we are only at the start of our grief, and we have ahead of us the post-funeral emptiness, the anniversaries, the bittersweet family holidays, and the awkwardness of re-engaging in every day family life. A downside of our professional backgrounds is that we have, I think, a realistic view of what lies ahead for us as a grieving family, and it is scary.

Of course this experience is making both Matt and I re-examine what we think about death, about afterlife, and this whole Christian faith thing we like to talk about. I don't know to what extent people who die continue to exist as the entity they were before, and to what extent the sacred elements of them just get subsumed back into God. But I am comforted to think that whatever extent to which Salome still exists as a brand new baby needing cuddles and caring for, that is also the extent to which my grandparents still exist as who they were. And if there is even a scrap of my grandmother Annie Lindeman still existing as Annie Lindeman, then Salome now wants for nothing, and is surrounded by family who adore her. The same goes for all our grandparents.

Now I want to talk directly to X and K for a moment. I want to say to X and K that both of you did a beautiful job in being big sisters to Salome while she was in my tummy and while Salome was very sick. Salome does miss you a lot, and she is sad that she could not stay with us to play with you and be your little sister. But her body stopped working because she was too sick, and so now she is with God. And Grandpa Charlie and Nanna and Ada-Kate will be looking after Salome, and Salome is happy now and isn't sick any more. Salome's death was nobodies fault and it certainly was not yours.

Salome Sweetheart, I can only say again what I said time and time again through your 2 ½ days with us: we love you enormously, and you are very precious to us. I told you that you needed to talk to God about what lay ahead, because none of us really knew what life held for you and what sort of physical and mental challenges you would have had. I told you that if you lived, we would turn our world upside down to care for you and give you the best life we could. And I told you that if you needed to go to God, we would find a way to be OK. I believe that you did talk to God about it, you made a decision, and then you left us. You called my bluff and you left us, and now I want to take it all back and tell you you have to stay with us because this sorrow is too big, and I can barely breathe. My love for you is too big to be left with nowhere to go, with no baby to hold, with no-one to breastfeed, and with no hope of seeing you grow and bring to the world as much joy as your sisters have. As I have said to X and K, Mummy and Daddy's sorrow is as big as the whole house. Maybe one day I will be able to thank you for fighting as hard as you did to stay with us as long as you did, but I don't have that in me yet because I am so sad that you are gone.

Salome I do believe you are with God. But God and I are not on speaking terms at this point, and I doubt things will improve between God and I for some time. So I will keep talking directly to you, and asking you and our ancestors who have gone before us to watch over our family as we wade through this awful grief.

Salome to have you in our lives we had months of trying, 9 months of nausea, all the usual strains and stressors that a pregnancy brings, and 7 ½ hours of labour, and we only held you for an hour before you died. Sweetheart, it was absolutely, absolutely worth it. Thank you for choosing our family to be part of. I will always wished you had stayed longer. Your Daddy and I will always grieve for you and miss you, and part of our hearts will always be buried at Catherine Hill Bay. But we will try to be happy again in the future, because that was what I told you I would do.

There is no way to end this eulogy. There is no satisfactory way to say goodbye to a daughter. There are no words, and nothing I can do to convey to you how deeply Daddy and I love you and how heartbroken we are at your death. We can only send you our love and our tears forever, and wish you the deep peace of eternal rest in God.

3 days after the funeral

I made a bad decision yesterday. I am not thinking well at present, and I decided on the spur of the moment to sign up for facebook. I have been avoiding facebook for about 5 years, but for some reason yesterday i thought it was a good idea. Now after pressing a few wrong buttons and initiating contact with people from ages past, my details are being flicked around the globe by a system I don't understand, and people I haven't had contact with for almost 10 years are suddenly emailing me with 'Hi how are you?" And what can I say back? "I have been pretty good but then my daughter died and now I'm shithouse".

Matt made a bad decision last week. Our solar hot water system died, so a few days after Salome died he ordered a new one. He bought us THE BIGGEST SYSTEM IN THE WORLD. It is being installed on our roof right now and it is big enough for a youth hostel. Massive and of course the most expensive. Matt says it is not a bad decision, just an extravegant one. Right. Because we've just spent $4500 on a funeral, so we have the money. Matt is reading over my shoulder and says what i am writing in a crock. Probably. But then to me at the moment the whole world is a crock so What Ever.