Ramping It Up: Children w disabilities, opinions, books

Why a child "just like yours" can be confronting

I spent time on the weekend speaking to a woman whose daughter was rather a lot like Morgaine. And there we have it, the dreadful and heartbreaking use of the past tense. Her daughter died a few years ago - a heartbeat ago, just yesterday, so close I imagine this woman still hears her sigh in her sleep - at the age of about three. I know this woman professionally. Not only that, she is Capital P professional, in a good way. She's very smart, highly articulate, and utterly competent. Also brisk, and fairly private.

I knew about her daughter, even though we'd always worked in different cities in the same organisation. It's one of those odd things, how these stories circulate - although they circulate with warmth, and compassion. Even so, I'd been lead to believe (before I had Morgaine), that her daughter had been so very severely disabled that she was hardly able to "do anything". I can't remember whether anyone ever used those terrible vegetable analogies. I hope they didn't, although a fearful part of me hears their echo. Because now I know that her daughter was pretty similar to Miz M. They both have types of Cerebral Palsy; both can't sit unsupported at all; both can't crawl, or walk, or talk. Both have hardly any head control. Both would be either sitting in a mobility device of supportive seating arrangement, or lying on the floor. Nothing in between.

Both much loved.

So on the weekend, we were in an unusual situation, meeting up socially with a bunch of other people, and with children in tow. Clancy has just turned one, so he was running around with glee, absolutely thrilled to meet these people, doing that indrawn-breath of laughter and delight, that wheeze of pleasure, that we grow out of. And M was there, partly in her chair, partly on the floor, and so this woman and I talked about her daughter: who was social, who was happy, who also needed a high level of physical support. We talked about therapies and what was available; about her experience of the UK where provision of services and equipment seems much much better than it is here (despite the way people love to slag off the NHS). She told me about carrying her up and down stairs and about Conductive Education. We talked about standing frames and travel, supportive seating and mobility devices, thickened water and modified barium swallow tests.

She was warm and straightforward, full of information and useful acronyms, ideas for support structures.

And part of me knew it was killing her.

She never let her lip quiver or her eyes gleam, and I was torn between knowing that to acknowledge it would be both awful and a relief for her; and also that it can be so very hard to talk about her like this, in the present, in this way. So I hoped it was some sort of validation.

And so she knew I was thinking about that; and I figure she knew I was fearful of the final detail and the terrible threat of death that hovered around us both. Her daughter really was very like my girl. They thought they had it sorted. And then, one morning, they went in and she had died. I know it was unexpected but I don't know what happened. One day we'll talk about that.

We emailed each other the next day, just to check in, to acknowledge the power of being able to talk about her; and so she could admit that yes it was difficult. Also, she said, your role changes, you're no longer a carer, and that's a strange shift too.

In a week that's officially Carer's Week, it was both lovely and scarey and heartening and thought-provoking all at the same time.

Being Scatty and/or Being Disciplined

I'm not a fan of feeling scatty or distracted or half done - as I have a history of being a person who gets things done, fulfils cliches of "multi-tasking", has a habit of being an over-achiever, and gets the details right. So I know I'll need new ways of doing things in this brave new holy-shit-I-have-two-children-now world. This means grabbing opportunities when I can. Like now. Clancy asleep on Abe's chest; Morgaine dressed and washed and playing on the floor; only about 82 un-answered emails. A huge list of things to do. Half-written notes everywhere. Piles O crap on floor of loungeroom. Keen to get to an exhibition today; want to get outside and get some exercise; would love to finish making the fabled "little room" sensory play area; wonder about what still needs to be done for Christmas; would rather like to soak some  more fruit in brandy for a Christmas cake; need to work out Skype; damn, what about doing my tax; oh yes, and even had a conversation last night about turning bits of PhD into articles or book. Yeah, right. Perhaps I should just add "remember to floss" at top of list, and see if I can get through a week of doing that.

Yesterday I read an article about Toni Morrison (no no no, am not even dreaming of comparing myself to her), where as a single mother, working as an editor at Random House, she awoke at 4.30 each day to write. Now, that's what a person needs to do. And although there are myriad things I can't get done at the moment, which drives me slightly demented, I can at least read. The one thing I do have going for me is enforced time sitting on a lounge with a small boy in my lap, breastfeeding. From there, I get to survey the room and see bits of spilt milk, sprays of breasstmilk turning to cheese, toys, books, magazines, and huge piles of expectations, deadlines, obligations, guilt, activities, pleasure, magazines, reviews, relationships, love and every other damn thing, spilling over ontop of each other. So anyway, I can see all that and balance a book in the other hand: so am finally rereading Toni Morrison's Beloved, which I've long had on my list of "best books of all time", but have never actually re-read. Too blown away by that first experience, many many years ago. Living in Annandale, in Sydney, in a share house. It was winter, because I remember being almost frozen into position, lying on the floor, transfixed by this story of slavery and violence and grief and anger and joy. And I remember a details of the burnt bottom of bread, and a gravestone, and a tiny throat being cut. So heartbreaking and beautiful and poetic and political, all at once. So I hope I like it still. I remember being fearful of rereading Marquez's Hundred Years of Solitude for similar reasons: such an intense reading experience, what if I didn't get it the second time around?

And finally read Helen Garner's Joe Cinque's Consolation, after avoiding her for a number of years. I used to love her fiction, then moved away at about the time of The First Stone, then finally read this one. I could hardly put it down. A story of grief and mourning and memory and justice. One friend saw it as a story of competing types of feminism, which I didn't (Anu Singh as a feminist? nope); but the grief caem screaming through.

But maybe that's about the way in which I'm feeling haunted by death and its promises at the moment.

I'm not as destroyed or cowed by it as I have been in the past - after Dad died, after my sister died, after Mum died - so instead it's been more integrated, more about mourning and memory and aftermath.

Although at the same time, these experiences with Morgaine and now Clancy, are heightened because of the dog's head presence of death in the room. When M was so small and we thought she wouldn't live past two - that changed everything. It made every bit of time since then, when we got the reprieve, it has made it all bearable and hopeful and full of the sharp vivid taste of life and potential and hope. And now this, with Clancy's metabolic condition - MCAD. It means he's a perfectly fine happy healthy normal baby, until and unless something goes wrong, and he's not. (Tragically, there are many stories of these deaths online, and they're thre strategically: to make a case, eg in the US, for universal neonatal testing. In Australia, all babies are tested for this and about 30 other conditions; in the US, that's not the case, so parents are lobbying.) So something can't go wrong. It can't. We can't let it. But just as everyone knows how to creep in and check the sweet puffs of a baby's breath sometimes, we have that heightened awareness. The "forever vigilant" part of our lives that has to become unwavering second nature, unti lhe's old enough to make it part of his own second nature, and his own decisions about risk. Damn, risk, that's going to be a lesson in parental self-control - how not to be a nagging nightmare. Meanwhile, I can never forget my watch. I can never ignore a little alarm that goes off and tells me to feed him. Can never think, oh, yeah, he'll be fine don't worry about it. Hospitals and emergency departments and specialists and drips and consultations and rattling off the acronyms and diagnoses and genetic implications. When not 5 weeks ago we didn't know any of this.

Clancy was born five weeks ago today. And in the first 4 days before the heel prick test came back, other babies in the same circumstances have died. Impossible impossible impossible.

All of this points to our decision for the day: time to head off to see a new contemporary art exhibition, "Optimism". Not blind optimism; not naive optimism; just optimism.

Shudder and Moan

I'm not even sure I'll get through the basic storytelling here, without ending up in a complete heap of awfulness. Yesterday was a terrible terrible day, although in some ways it'll sound so stupid it'll be hard to convey. Yesterday morning I was working here, on the computer, with M on the bed next to me, when suddenly there was an awful thump as she'd fallen off the bed and landed smack on her head. It's a high bed, too, so she fell a long way. And she's so so so vulnerable anyway, that I was really really beside myself with fear. Her head immediately came up in a huge purple and red lump. No, you see, I can't convey how awful and scarey and hysterical the whole thing was.

I phoned Abe immiediately - he's a medical doctor, so I knew he'd be able to tell me what to do - but he had to try to get me to calm down first, then to work out what to check for and how to put a cold pack on her and all that. But what to check for included what may present a few hours later if there was swelling on the brain. So I lay there with her, feeling her soft limp body, and feeling so deep in the pit of my stomach how impossible and devastating it would be to lose her, to consider anything happening to her. I remembered the grief Abe and I both felt when we were told she might have SMA and not live beyond 2, and that was awful but in some ways this felt even worse. I didn't think it could feel worse. But the more I know her the more and more devestating it is to even contemplate anything happening to her.

So I couldn't take my eyes off her all day. I couldn't go anywhere. I couldn't do the bits of work I needed to do. And whever I thought about what had happened again I heard this awful moan come out of my throat, like some terrible melodramatic primal monster.

Even though I know I know, every parent has had a similar experience, of kid doing a faceplant off a sofa, or falling from a tree, or falling off the top of a set of stairs (this happened to one of my sisters, long before I was born, and I remember mum talking about it - with me having no idea just how impossible to forget that experience was). But it's also hard not to think of her extra vulnerabilities, her inability to save herself at all, how completely reliant she is on the stupidity of people like me.

And then, of course, I remembered things that had happened to other people, much much worse, and am agog at their ability to get through, to survive. I have a friend who's a bit older than me, who has four adult children. She's very urbane and interesting, full of life and passion about the world. We met while travelling in Vietnam, and she's intensely curious about people, in a good and dynamic way. She's curious about what makes them work. But under that, she's sometimes hurt by the ways in which that interest isn't always directed back.

She had a son who died at about 4 months old; and a daughter who was stillborn. These terrible deaths haunt her, although they don't hold her back or limit her. When it looked as though we were dealing with M's imminent death, she rang me so generously, and came to stay; and her husband called me too, with so many words of wisdom and compassion, about acknowledging how different each of our experiences - mine and Abe's - would be, and giving each other space.

And Cassie, the physiotherapist we're working with, had a son who died at 3 and a half. She talks about him with great warmth and tenderness, and makes him appear in front of you, with his energy and his thoughtful funny little sayings; his knowledge of the invasive medical procedures he had to go through; his awareness that good and kind medical people can still be good people, even if they do things that hurt you. How on earth has she survived, to be such a forceful and warm person?

So yes, perhaps I was wallowing in all these thoughts yesterday, but they all came rushing and crowding and beating their way in. And I was so grateful for Abe, for his love and sense and -- hmm -- even his jokes about terrible mothers who drop their babies on their heads.

Meanwhile, one of my outstanding work projects invovled reading Mark Wakely's book Sweet Sorrow: A beginner's guide to death; as well as meeting with and interviewing a thoughtful and sharp palliative care doctor, whose analysis was in some ways more nuanced than Wakely's. She was driven by policy and political considerations, as well as by practical compassion and a strong awareness of the need for systemic change. I also spoke to a funeral director, about working with grief and managing the rituals of death and memorialisation. Then read David Rieff's Swimming in a Sea of Death, as well, which was also about denial and prognoses, the use of language and research as a wall, used by his mother Susan Sontag to avoid confronting death.

And this morning I read about Philip Roth's new novel which, once again, has death as a protagonist; and am planning to read Margaret Gibson's new book on material culture, death and memory, Objects of the Dead, Mourning and Memory in Everyday Life, published by Melbourne Uni Press. She was on Life Matters on Radio National last week, and I missed the segment, but the stories it inspired in their online guestbook are really worth reading.

But I still can't bear to put M back on this bed next to me as I write, although I know I will eventually. She'll be surrounded by pillows (she usually always was: aaaaaaargggggh); and I'll turn around and check every 15 seconds. And I still have a knot in my stomach and a moan awaiting in my throat, just thinking about it. But I can hear her aaaah-ing at Abe downstairs, and of course she's just fine. Her giant bruise will fade. I may keep pressing on mine.