Tuesday, April 28, 2009

Ronnie Mac House

Communal living has its ups and downs. Living at a place like Ronnie Mac House at the children's hospital certainly was an education. Over the time that our family stayed there we encountered people from many different walks of life, and quite a few cultures. Most families who stay there will be far from their homes and their extended families. Some families were from across the other side of the country and others usually lived only a couple of suburbs away from me. Negotiating the communal living experience was a huge piece of the jigsaw that my life became when Thomas was admitted to the NICU.

One of the hardest things to get used to was the feeling of being so exposed. With the exception of our bedroom everywhere else was public space. Our bedroom was shared also, we all slept in the same room, me and my husband and my 11yo son.  It was impossible to have a private argument/disagreement with my husband. I found it extremely difficult to keep my sons behaviour in check. I felt like I was being watched everywhere I went.

The kitchen was communal, each bathroom was shared between 4 families, the lounge, the backyard, the laundry, the clothesline, the dining room, everywhere I went, I felt that I was on display. Even in the bathroom with the door locked while under the shower, it was always on my mind, "don't be too long, someone else might need the toilet or the shower" and there was the constant battle in my mind of "is it better to keep my toiletries in the bathroom cupboard and risk them being stolen or is it better to take them to my room and risk forgetting to bring something every time".

We had a family who were of the Muslim faith on our floor and we shared a bathroom with them for about 7weeks. It took me ages to work out why the bathroom floor and the toilet seat was always so wet, with wet towels lying on the floor. I am always very suspicious about wet toilet floors and seats (it comes from having boys). Its natural to wonder "what kind of wet is that". Anyway there are strict washing procedures that must be followed before prayer and that is what makes the mess. There must be huge business opportunities in bathroom renovations for these families. Also the smells that would accumulate in the bathrooms were foul. There was one or two disposable nappy disposal units in each bathroom. In the middle of summer they became disgusting quite quickly. I hated sharing bathrooms.

One of the things that I missed so badly was the companionship. There was always someone to talk to, usually even 24 hours a day. Not that I was allowed to talk 24hrs a day. There were rules for talking after 10pm, so as not to wake people up. But people just got it. They got the anxiety, and how much I wanted to be at home and they always asked our time frame, when could we go home. There were many stories to hear too. A family had been bringing their daughter yearly to the hospital for 4 years, she had been born with half a heart and had many many surgical procedures to help her grow. A one year old baby girl who received a liver transplant had spent more than half her life in hospital in a different state to home. A little boy with a brain tumor going through treatment and losing hair getting thin, being sick and weak, taking a pharmacy of medicine everyday.

There were all sorts of good companies that organised it so their employees had some time to volunteer in the community by supplying meals to the families living in the house. I had quite a few meals courtesy of a bank and an insurance company and Rotary Club. It really was great to know that a meal was not one of the things that I had to worry about on that night.

It was so good to be able to pop into the hospital "whenever". The house was just across the road and through the car park, then through the Emergency department, then down 2 corridors, up the lifts, and down another corridor. It was about a 5-6minute trip to get from the house to the bedside. Sometimes it felt like it was a hundred miles away though. The house rules meant that I was not allowed to leave my 11yo at the house unattended by me or my husband, even if he was asleep in bed, or watching TV in the afternoon, while I popped over to the hospital to check on my baby. Understandably my 11yo didn't want to sit at the bedside for more than 5 minutes, so sometimes it was impossible to get across the road and through the car park, etc, etc. As soon as he went to school and I had done my milk I could go over and spend the day there at least. Some days I would go back and forth 4 or 5 times. There was a lot of walking. I had very sore feet.

One of the big "up sides" was no housework. The housekeeper kept things running, she had lots of help from volunteer staff and there were contract cleaners who cleaned bathrooms and vacuumed floors every weekday. The housekeeper would keep the laundry powder supply flowing, be the supplier of chocolate (we all know that chocolate fixes everything) get to know the families, and be a sympathetic ear when needed, she would get tough when required too. We had to take responsibility for keeping our room tidy and cleaning up after ourselves in the kitchen of course. Some days I barely coped with that.

The down sides were many. Mostly it was the people who went too far. There were a few families that felt that life had dealt them a lucky break, they had received a lovely holiday at the Governments expense and they would invite their friends and extended families to stay with them. Often they would have a few small children who were mostly unattended and not usually fed. These families would party in the backyard, getting drunk, one family even had their car backed up with the boot open and the stereo blaring. The whole time one of their children ate everything he could lay his hands on in the fridge. There were rules for this behaviour too, it was definitely not allowed but the truth was it was very hard to stop, especially if it happened when management are not on site, in the end there were surveillance cameras installed. One family smoked dope in their room, it stunk out our whole floor. One parents idea of discipline was to simply shout their child's name loudly over and over. It really began to grate on my nerves quickly. One parent just lived for gossip and she seemed to have a watertight memory for any detail. She even remembered things about me that I had forgotten. There was the pregnant mother with a child in a pram and one in the hospital, she smoked and drank. The mum who went to the night clubs in the city while her child was on the ward receiving Leukemia treatment. It was a melting pot and the pressure triggered the best of humankind and the worst of society.

The kitchen and how people fed themselves was very interesting. People swapped recipes or ideas. Sometimes a "Please eat" offering would appear on the bench, a chocolate cake or sweet treat that was cooked to fill in the empty hours. Occasionally a better meal was being cooked right next to me, often it was a worse one. Some families never ate before 8pm, other families had children on cancer treatments and their appetite was extremely fickle and weak. Sometimes I would find a mum cooking chicken drumsticks at 11pm because their little one thought that would be the only thing that they could eat that day.  The family of the Muslim faith had some interesting kitchen habits. Their religion even required them to avoid using any cooking implements plates or cutlery that might have been in contact with non-halal meat. They used only disposable paper plates and plastic knives and forks, they had disposable aluminium baking dishes and plates and they bought their own coffee mugs. It seemed pretty complicated to me.

The rules really ruled our lives. No TV in any room after 10pm. No talking after 10pm. No drinking unless it was at the evening meal and accompanied food. No unattended children. Sign the book when you leave and when you come back. Never leave the doors unlocked. Don't use the washing machines or dryers after 10pm. No smoking in the rooms, no burning of any item including candles. Wash your dishes and put them away. Label all food in the communal fridge with your name, date and room number. When vacating your room vacuum and wash the floor, wash the doona covers and replace them, put new linen on the beds, wipe out the cupboards and the little fridge in your room, put new supplies of towels and face washers in the room, put new rubbish bin liners in the bins, put the bedspreads on the beds. Hand in the keys.

Saturday, April 25, 2009

Under the tree April 2008

How long has it been since you lost your child/ren? Has your grief changed at all? Is your life becoming any easier or is it just harder as time passes?
Thomas passed away 1 year and 56 days ago, or 421 days ago. He was 135 days old.
I still have the same grief but I express it differently now, I am still heartbroken, I still want to go back in time and hold him.
Is life becoming easier or harder, well I suppose it is easier now that we have passed Thomas' anniversary. In the first 6 months I felt like I we were all on the same page, everyone grieving at the same rate. People would take the time to be sensitive to our grief and try to be nice. I don't really know how I got through the first 6 months, I think that I was on autopilot and I just did what my husband told me to do.
Initially when Thomas passed away things changed because we moved back home. Our family was all together, minus the littlest one. We had our own space again, we didn't have to share space with a lot of strangers anymore. I was finally able to sleep because I didn't have to be at the hospital anymore. I was able to sleep in my own bed. It was better, even though it was so bad.
But I must say that I believe the second 6 months of life without Thomas was harder than the first 6 months, most bereaved parents I know have said the same thing. I am so sorry if you are starting to experience this, I hope that for you this will not be true. 
I am better now at choosing who to tell things to and who to just show the mask. I am better at recognising a like minded heart, someone who can listen and get it. There are a lot of people that I wouldn't dare show anything other than my mask to, it would be just to risky. Then there are the other people who I have to show the mask to, like family or my sons schoolteachers, because they expect me to function in a certain way. It is just risky to let the mask slip around them.
There are some people who will listen because they want to be good and caring and kind, but really they can't cope with it, I am going to have to find a way to stop myself in those situations.
I think that I am almost at the point where I wouldn't bother telling anyone my story anymore, unless it is in exceptional circumstances. I think that it means I have almost emptied my self. I wonder if that could have been done sooner if I had been able to talk more about Thomas.
I believe that  I am "working the program" my grief has many stages and I will sometimes jump from one to the other and sometimes I sit in a spot for a while, some days I do all stages at once. Somedays I have trouble accepting that he actually died, somedays I feel it was so long ago that he might not have been born at all. I wish he was still here (even though he was so very sick).
I believe that I am forever changed. I will never be the same.
How do you feel when you see pregnant women when you are out and about?
I try not to look at them. It is hard not to, they just seem to draw my eye. I have a close friend who has a 3 month old baby. It was sometimes difficult and sometimes heartbreaking watching her belly grow. It gave me a chance to talk about my pregnancy though. This friend is really the only person who didn't freak out when I used Thomas' name or spoke about him.
I sometimes feel anxious for the pregnant women I see, I wonder if they know about the things that can go wrong. I hope they never find out.
I went to a party recently and there was a young woman there who looked as though she was due. I just kept on stealing little glances at her. She was so happy and content, she was surrounded by people who cared for her and she appeared very healthy. I hope her baby has been born already and all is well.
I remember being a first time Mum. Nothing could have properly prepared me or explained how it feels to deliver a baby. Similarly, nothing could have softened the impact of Thomas death, grief just smashed right through me, there are little bits of it embedded in me. Everywhere.
What's your therapy in the aftermath of losing your child? Do you go to counseling? Do you do artwork or some kind of exercise or do you simply just let yourself be? What helps you?
My therapy has been lots of things, things that make me feel something. 
Talking has definitely been the most important. I think that it is very important to talk to people that knew me when Thomas was alive. People who met me as Thomas' Mum. Parents, nurses, support staff. Even just knowing that someone is there is important. Knowing that I can make a call, send an email, or a message on Face book and talk to one of Thomas' nurses if I want to is one of my lifelines.
Sleeping was important therapy, grief makes everything exhausting, even just thinking about things made me exhausted. I am lucky that my husband coped well with my clingyness because cuddles are fabulous therapy. For serious therapy I went to the the hospitals "bereaved parents support group"  where I listened to other people talk about their children, and they listened when I talked about Thomas.
Work is therapy, because I have to focus on life. I am still here and work is something that I need to do. I have found that I don't have the concentration for anything very hard. I just want something that keeps me busy. Somedays I feel like I could be an Altzimers patient, a whole lot of fluff upstairs. I am told it is a common symptom of depression. It can make my working life a bit frustrating.
I have had so many people tell me that it is OK to take Anti-depressants. They dispense this advice as if they are the only people in the world who are brave enough to tackle the topic of depression. The thing is that I am grieving and that is a natural process, given my situation. My baby died and I am supposed to be sad. I don't want to take a pill and behave like I forgot that Thomas ever existed, that he never died. If I was all happy and laughing all the time it would be wrong, I want to grieve. I suppose that grief in itself is therapy.
If grieving didn't make me feel better, then I wouldn't read all the baby lost blogs that I read. I wouldn't cry about other dead babies. How many times have you heard or read the phrase "have a good cry, you'll feel much better afterwards". Crying is therapy.
I actually go and see a real live therapist too, one on one. She has lost a baby too and she is great. One day I might be able to give that up but not yet.
I ran into a friend the other day. She is someone I used to work with. I didn't really connect with her when we worked together. She left the company to have a baby (her 2nd) just before I fell pregnant with Thomas. We connected at a support meeting for parents of children with Down syndrome. She said to me "I decided, you know what, this is my life too, yes I am a busy mum, I never have enough hours in the day, my kids are full on all the time, BUT, I need to do what makes me truly happy, for no-one else but me, because I want to, because I need to, because I want to be the best mother and wife I can be, so, I started running, and I love it, I get a high from it, I do it because it makes me happy" my friend encouraged me to find the thing that makes me happy and do it. So, I have joined a choir. It's my happiness therapy.
I believe that we all need sadness therapy and happiness therapy, and a lot of lifelines. This blog is one of my lifelines, I am the audience to yours.

Wednesday, April 15, 2009

Sweet Salty

I just read this post on Sweet Salty.

Its about babyloss and grief. Its the transcript of what she said for a walk to remember.

Some people can express things so well. Words are like brushstrokes, thoughts are arrayed in layers and focus like a landscape painting.

So many "just right" thoughts.

Wednesday, April 8, 2009

I've Missed You

I miss Thomas all the time but there is more that I miss.

I miss his toys and I miss his tubes. I miss the nurses, I miss the other mums, the social workers and the hospital.

I miss waiting for him to get better. When I was waiting for him to get better I had hope. I had hope that he would live, that he would come home and grow up and we would be involved in his care and it would have been hard but he would have been alive. I still feel like I have hope. That's really strange. I don't know why I would have hope now, he died over a year ago. I look at his pictures and I just really want him to be here.

This photo shows toys I made him. I hand stitched these while I was waiting. They are textured for touch stimulation and coloured for visual stimulation. 

When I look at the photo I posted previously I can see more of his toys, some of the ones I made are there, some were given to him and some were chosen by my husband and I. When I look at all of Thomas' things I miss them too. I feel like unpacking the boxes and getting them all out, so I can feel closer to him. I know that would just make me sad. I have kept the red satin donut out where I can touch it. He was buried with the pink terry square.

I suppose I am lonely. Rowan has been at his fathers house since Saturday and I have been by myself a lot of the time. 

I just want to shout and scream, why couldn't he be here. There is no answer.

There are memories, images and words.

Grief, broken, wounded, hurt, sobbing, inconsolable, empty, angry, defiant, protective, tired, exhausted, mangled, robbed, alone, searching, waiting, remembering, hiding, accepting, acting, performing, stressed, breathing, living, loving, embracing, storytelling, chronicling, hoping.
A picture of Thomas with heaps of toys to look at.

Wednesday, April 1, 2009

Pearls of Pooh

I love stories about Pooh and Piglet and Owl and all the creatures in the Hundred Acre Wood. 

I read the book "The House at Pooh Corner" by AA Milne to Thomas while he was in the NICU. I even sang the songs and did funny voices for Owl and Eyeore. It is quite a funny book and at times even the nurses were giggling at the antics.

One grandpa came over to me once while I was reading about Pooh and the Hundred Acre Wood, he told me that he thought that it was great that I was reading to Thomas, he encouraged me to keep on doing it. That was actually very sad day for me because I had realised that morning that Thomas was not going to get better. I was reading in defiance of that outcome, it was as if I read to him really well, he would live.

Here are a couple of Pooh-isms

And as they walked Piglet said nothing, because he couldn’t think of anything, and Pooh said nothing, because he was thinking of a poem. And when he thought of it he began:

What shall we do about poor little Tigger?

If he never eats nothing he’ll never get bigger.

He doesn’t like honey and haycorns and thistles

Because of the taste and because of the bristles.

And all the good things an animal likes

Have the wrong sort of swallow or too many spikes.

“He’s quite big enough anyhow,” said Piglet.

“He isn’t really very big.”

“Well, he seems so.”

Pooh was thoughtful when he heard this, and then he murmured to himself:

But whatever his weight in pounds, shillings, and ounces,

He always seems bigger because of his bounces.

“And that’s the whole poem,” he said. “Do you like it, Piglet?”

All except for the shillings,” said Piglet. “I don’t think they ought to be there.”

“They wanted to come in after the pounds,” explained Pooh, “so I let them. Its the best way to write poetry, letting things come.”


“Pooh!” squeaked the voice.

“It’s Piglet!” cried Pooh eagerly. “Where are you?”

“Underneath,” said Piglet in an underneath sort of way.

“Underneath what?”

“You,” squeaked Piglet. “Get up!”


So he sat down on the stone in the middle of the stream, and sang another verse of his song, while he wondered what to do.

The other verse of the song was like this:

I could spend a happy morning

Seeing Roo,

I could spend a happy morning

Being Pooh.

For it doesn’t seem to matter,

If I don’t get any fatter

(And I don’t get any fatter),

What I do.

The sun was so delightfully warm, and the stone, which had been sitting in it for a long time, was so warm too, that Pooh had almost decided to go on being Pooh in the middle of the stream for the rest of the morning, when he remembered Rabbit.


Its a Jagular,” he said

“What do Jagulars do?” asked Piglet, hoping that they wouldn’t.

“They hide in the branches and drop on you as you go underneath,” said Pooh. “Christopher Robin told me”

“Perhaps we better hadn’t go underneath, Pooh. In case he dropped and hurt himself”

“They dont hurt themselves,” said Pooh. “Theyr’e such very good droppers.”


“Pooh” said Piglet reproachfully, “haven’t you been listening to what Rabbit was saying?”

“I listened, but I had a small piece of fluff in my ear. Could you say it again please Rabbit?”


“Rabbit’s clever” said Pooh thoughtfully.

“Yes said Piglet, “Rabbit's clever”

"And he has Brain”

“Yes” said Piglet, “Rabbit has Brain”

There was a long silence.

“I suppose, said Pooh, “that that’s why he never understands anything.”