Thursday, November 8, 2007

The 8th already?

How did it get to be November 8th already? I just blinked and the weeks flew by.I've been away for the weekend and at work for three days after that so I guess that accounts for 6 days.

My weekend away was for the twice-annual Kalparrin Mother's respite weekend camp. This is a group of women who are linked by all being mothers of children with special needs, and we go away together twice a year to have a kidless, husbandless weekend to rediscover ourselves in the midst of our busy, often chaotic, lives. I have attended 32 of these events since November 1989 and they have genuinely shaped my life (and continue to do so).

We arrive on Friday early evening and settle in to our accomodation, usually a large house or dormitory style setting. We hold an introductions session, where old friends and new gather and set the scene for the weekend, sometimes with a theme. We are then released to socialise and catch up with our colleagues (this is a peer conference, remember) and often have a late night chatting. It takes a lot of effort to get mothers away for a weekend alone, so we make our time count. There are workshops over the weekend for fun, or more serious stuff like journalling, and a dinner event and dancing on Saturday night. There's pampering too - reflexology, Reiki, massages, manicures and counselling if required. Its really great.

When I first attended camp my daughter's paediatrician arranged to have her admitted to hospital and be specialled for the weekend, so I could feel secure enough to go without burdening my husband with sole care of her and our 3 year old. At the time she was naso-gastric tube fed and had massive reflux with violent retching, gagging and cyanosing followed by projectile vomiting. She often threw up her tube which had to be reinserted before the next feed on a 3 hourly round the clock cycle. The worst day for replacement was 6 tubes in one day, but it was usually (only) 2 per day. Every tube replacement meant she had to be restrained and she naturally fought and gagged the insertion. All this to keep her alive, because she had almost no instincts to be hungry and only cried with hunger and swallowed milk (my expressed breast milk) in a coordinated fashion about 5 times in her first two years of life. Those few minutes are precious memories that still make us misty eyed.

Anyway...this nasogastric torture /feeding hassle continued for a year at which point a gastrostomy tube was inserted directly into her stomach. She continued to be a non-oral feeder (and massive vomiter) until the age of 2 when, after an intensive behaviour modification therapy program, she learned that her mouth was not just an exit point, but that she could learn to be an 'eating girl' and put (smooth) food into her mouth and swallow without gagging. Triumph!! We had an 'Eating Girl' party! We invited all our family and friends and supporters and therapists and celebrated Stephanie's oral eating triumphs. It was pretty cool. We weren't completely out of the special needs woods but it was a massive improvement. And I continued to cope by meeting with my colleagues at regular camps and supporting others (and sometimes being supported by them).

This weekend was the 50th camp to be held so the theme was "All that glitters is gold". We had a special ceremony to honour the early organisers of the mother's camps and those who have continued to be involved, including the first-timers who are the future of the organisation. We scattered rose petals, held hands, laughed and cried, looked at photos, journalled, gasped to see long-lost friends, caught up on news, ate and drank heartily, and gave thanks for the gold in our lives - in all its forms. Whether found in the dirt at our feet like alluvial gold nuggets, or panned for with careful examination in the light of day, or blasted out of deep deposits with dangerous dynamite and extracted by acid and cyanide digest - these are the ways to get gold. We, as a group, have used all methods and understand the value of the flecks or nuggets we hold. We were offered these images, and challenged to refashion our gold if it didn't suit us in the current form. At the end we all took home small packets of gold hearts, with some glitter to add other sparkle to our lives, to remind us of the gold we had shared that weekend and to keep.

I didn't feel up to too much gold and glitter this weekend, but dressed all in white to glow a little, with a sparkly heart brooch instead to remind myself that I am loved. The weekend did however remind me of how lucky I am to have such a group of thoughtful, insightful women to belong to, and how much they have sustained me on my journey as a mother and a woman. We would be very happy to never have another mother qualify for the group, but we have been privileged to share many life experiences - before, during and, sadly, after disability - and we are all the richer for it. We laugh and laugh, and may not see each other between camps but we share a very intimate life in so many ways.

So this is some of the background that I bring to my craft as a midwife. People ask did I become a midwife because I like babies? Or because I was inspired by the nurses and midwives who cared for us in our contacts with disability? Well, yes and no. I like babies immensely, but I am more interested in the containers they come in - in women, and families. To see a baby in the context of its parents, and family - THAT is the complete picture. Otherwise I might as well be a paediatric nurse , which is not my calling.

I understand the big picture, that a baby, per se, is not the be all and end all to family life. I know that when a child is born with a disability that the important thing is that a child is born. And that the important thing when a couple become parents of a child with special needs is that they have become parents. Four months in utero, four minutes of life, four years or four score years, that connection between parent and child is immutable. As a midwife I work in this field of transformation, and I love to see that understanding dawn in the families I work with. It gives you hope.

So, where was I? ...having a lovely camp took up a few days. Then I went back to work where I am beginning to find my feet and feel competent. My brain is now finishing the shift with me, and no longer waking me up at night with things it has just remembered from the late shift!

Hmm long post, kids hovering, got a cold and feel like crap (how do tracheas hurt anyway?). Lots to do, including finishing the new Ultimate Purple Bag (2/3rds done). To the shower!

1 comment:

Lesley (El Zed) said...

I remember those early days with Steff. I was so full of dread at what you had to do for the poor little thing, and admiration that you got through and lived a normal life all around it.
And now, just look at this year of wonders! Patrick's chugging along at uni, Steff's graduated from high school, and you and Don have been on a world trip, all alone, and not a quick one either.
Big pat on the back, my friend! XXX