Wedn 24th March: A job for Perth people

Some of you will be familiar with this site:

http://namesinthesand.blogspot.com/

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.