Tuesday, April 29, 2014

It's been a year, but...

It's been more or less 12 months since Connor's first attack of Rumination Syndrome. At the time we had no idea what the problem was. All we knew was our child was extremely ill and nothing seemed to help. We tried changing his diet, cutting out certain foods and introducing others. We tried Gaviscon and special waver-tablets that they give to kids going through chemo. Nothing helped. He was tested for every allergy and every disease, including leukemia. Everything came back negative. The doctors shook their heads. He saw at least 6 different doctors but none of them knew whether it was physical, social or psychological (I now believe the latter. Which doesn't make it less of an illness.)

Three times he was hospitalised. The final time I took him to Princess Margaret Hospital for Children and refused to leave until he was admitted. Meanwhile his sick bag filled and filled until, finally, it exploded.

They admitted him on the spot.

24 hours later (or 3 months, depending on how you time such things) we had the diagnosis. Rumination Syndrome: no cure, no real treatment. Try chewing gum. Try breathing exercises.

Nope, they didn't work.

Finally around January, just as we, as a family, had learned to live with the illness and make adjustments to our life, we started to see a slight improvement. Day by day we noticed some lessening of attacks. 40 became 30, became 20, became 10. From attacks every day we started to see the odd day missed. This was mid-February and Lee and I were starting to raise the possibility of Connor returning to school. Mid-March we started to see records broken.

3 days clear.

5 days clear.

A week.

The only thing we could put it down to was time and maybe, perhaps, Chamomile Tea. It was something we'd tried about 2 days before the first signs of let up and even now we notice it gets worse if he doesn't have the tea for a while (such as when he's been at his Nanna's).

Vomiting would recommence in between but for shorter periods.

Two weeks ago Connor enjoyed 9 days straight before he started again and even then it was only once a day for 3 days.

We could handle this. If Chamomile Tea was the answer then we were happy to make it an ongoing part of our life. The school was contacted and yes, they were only too happy to take him back.

No conditions. Connor is now accepted as having a disability because he's registered as such with Centrelink. It's amazing the difference a legal label makes.

Guess which 9 year old is super-excited about his first day back at school tomorrow? It's been a horrible, awful year, but this is the light at the end of the tunnel.

Yesterday, Lee and I took Connor to meet with the teacher who'll be picking up Connor's schooling. She's a young thing, early 20s, sweet, kind and everything I could have asked for. In fact, she's everything I did ask for. I put in a request for a teacher who is understanding of Connor's illness, who will make allowances for it, will be patient, will understand when he has to run from the classroom without explanation. The teacher was allocated and came to the meeting loaded with ideas on how to handle Connor. Our boy will be given a card which he'll place on the table when he has to leave suddenly. This way he doesn't have to put his hand up, but she'll see at a glance why he's left. No other child will know what this means, just Connor and his teachers.

Yes, teachers. He's been allocated to an assistant (there is another child with needs in the class) and she will give him any help if there are problems. He's also being given a blanket, beanbag and pillow and a 'chill out' area, so if he feels too sick to continue, he can lay down, then return when he feels ready. The theme this year seems to be "Let's keep Connor at school." This time last year they called me at the first sign of vomiting and told me I had to pick him up. In the end I gave up and home schooled. The feeling this year is very different. They asked me how many vomit sessions constituted a mum-call. I decided on four, usually because this is the point where Connor starts to feel weak.

We've decided to break him into the system slowly, one day this week, one day next week, two days the following...etc. Today Connor told me he wants to go two days next week. I'm more than happy to let him self-pace the return.

I am so pleased and happy with this result. Meadow Springs Primary School is an amazing place and I'm incredibly happy with the education and care my children have received there. The staff are nothing short of wonderful and deserve all the recognition in the world. The consideration they are giving our boy is second to none.

Below are some photos I took a few minutes ago. They show Connor getting ready for his big day. I'm as excited and as nervous as a new mum watching her baby enter their first day at Kindy. Yes, I'm scared. What if it all goes wrong? What if Connor hates it and wants to go back to homeschooling? What if I return to my normal life, only to have him get sick again.

Well, it's a no-brainer really. I'll hold Lee's hand and make the decisions as they need to be made. We've got through this together, as a family and we'll go through the next chapter in the same way. Because that's what we do.

Hat into bag, just like any other school kid.

Vomit bags into bag. Not quite like any other school kid.

"Tomorrow is going to be the best day ever..."

"I'm so excited, Mummy. Can you tell?" Umm, yeah, I sort of gathered.

My happy, beautiful boy, returning to life as a 'normal' school kid. (Ignore the messy bed. That's how Connor rolls.)

Tuesday, April 22, 2014

A tale of things past

Once, back in the 70s, 85 Amberley Road, Balga, had been an ordinary house owned by ordinary people intent on going about their ordinary lives. There was a Dad (ex-cop, now electrician), Mum (housewife, poodle-perm) and two boys (five and two). Dad was everything a Dad should have been: warm, loving, generous sense of humour. Mum was what you'd have expected from a Mum: great cook, semi-interested in housework, good with crafts and given to gossip. The boys were normal boys, rough, ready for a fight and really into Spiderman.
I loved this house so much. It was a classic house of its time and suburb. A product of the 40s, it was built to bring a second chance at life to returning soldiers and their families after the war. Most of the houses on the street were owned by the military and every few years we welcomed a new young family as our next door neighbours. As we grew older, they didn't. The house next door was given over to newly-weds and those with young children. We saw those children go from being babies to toddlers but never any further, for they'd move on again and the next couple would arrive.
Not number 85, though. Somehow the army had passed over it and a normal suburban couple and their kids lived there. They were a forever family, built to grow up and old in that little house, just like my family in number 37. 
I've spoken about Maureen in my blog before. Maureen was, and continues to be, the mainstay of my life. She taught me so much and it was through her I started to understand the importance of music, of marriage, of family, of crafting, of cooking and of reaching beyond what my own parents had given me. My mum and (various) dads might have created and raised me, but Maureen molded me into an individual. She was the first person to say "You're smart. You can do anything you want in life." At some point I stopped hearing the message, but I never stopped thinking about Maureen and what she would want for me.
The person I haven't spoken in depth about is Doug. Doug was important too. He taught me that men can be decent and loving without being abusive or over-stepping any boundaries. He, and only he, is the reason I trust any man today. In a childhood full of men, it was his character who shone most brightly.  He was good, kind, strong, opinionated and gentle. While Maureen taught me the importance of being true to myself, Doug taught me the importance of being true to others. He used to compliment me and tell me how amazing I was. Initially I was shy and refused to believe it. I would hide my face and shake my head. Later I held my head up and announced "I know." Doug was kind in both this instances and soon put me right. "It's best to say 'Thank you' to a compliment. Just a simple 'Thank you.'" And so I do. 
As I grew older and started to develop, he advised me to tone it back, to have people listen to my thoughts rather than look at my breasts. He taught me how to catch a man's gaze and hold it so he wouldn't be tempted to sneak a peek. Yeah, they still stare at me and they peek as much as they want, but the important thing is, I use my brain to speak for me, not my breasts.
I met Doug and Maureen when I was nine and for the next six years they were the most important people in my life. They kept me going through what was the absolute worst time of my life. Because of them I was able to hold my head above water and keep my sights on the shore-line of turning 18 and getting the hell out of my life.
And then, at 15, everything changed. Dad died. It as a sudden death, a freeing death, especially for me. I've never cried over my Dad's death because even then I knew it was the best thing ever likely to happen to me. That chapter of my life was over. My brother and I went off to live with my uncle and aunty and real life began for us.
I was happy for a while. Sort of. It wasn't a perfect life but it was better than the previous one. I still got to visit Doug and Maureen on weekends and kept them up to date with what was happening in my life. I told them about my new boyfriend. I shared with them when I lost my virginity. For the first time I talked to them about my childhood and just how awful it was. They'd known it was bad, but they hadn't known just how bad it was. However, I also outlined my plans for my future and uni. I was going to be a writer and an English teacher and have a big house and lots of kids and a wonderful husband. I was going to do all this and they were going to be by my side through it all.
And then they unveiled their grand plan. They were selling up, packing up their van and taking their boys around Australia. My Dad's death may have had a positive impact on my life, but it had also had one on theirs. They'd come to the realisation of how short life was. They had sat up late discussing his death and my revelations and decided that a close family was the most precious possession they had. They determined to close ranks and head out on the road.
Within two months they were gone.
I never ever saw them again. Thirty years later there's a place within me that still feels the deep and ongoing pain of their leaving. They were supposed to be my forever people. They weren't.
I think that's why I find it so easy to let go of people today. People I love come and go from my life with surprising regularity. Children, best friends, siblings. They've all, at some point, said, "Enough's enough. Good-bye." It hurts when it happens, it hurts like crazy, but not like losing Doug and Maureen. Back then I didn't know how to handle it. I was a child, a child who had, in turn, lost her mother, her father and now her best adult friends.The grief was immense and eventually I withdrew into myself until I was ready to let go. I still do that today and it helps.
On Sunday I had reason to revisit Balga. I pointed out my old street to Lee (it had changed from Amberley Road to Amberley Way sometime during the late 70s) and we took a tour for old time's sake. The biggest shock was not how run down my old house was or how small it seemed. No, the biggest shock was that number 85 is gone. Oh, there's a number 85 there. In fact, there's three of them, but they're not the 85 that I knew and loved. They've torn it down, removed my past and replaced them with faceless units that mean nothing.
I had Lee drive past twice to make sure I hadn't misread the number, but no, it really had disappeared. 
This is the stuff writers dream about. It's the stuff that informs stories, that builds setting and creates scene and character. This morning I woke up with the first paragraph in my head. Obeying my instincts I wrote that paragraph down and saw it as a gateway into my novel The Camp of Women. By the end of the paragraph I wasn't seeing the house anymore, but Maureen, Doug and the life they've led me to. They're gone, their house is gone, but I'm still here. I could have been the sum of my parents' input, but I'm not. I'm the creation of Maureen and Doug Smith. I am who I am because of them. I love my family because of the way they loved. I delight in cooking because Maureen taught me to bake. I can accept a compliment with grace because Doug taught me how to. 
I miss them so much but I'm grateful for the years that they gave me. I would be a very different person if they hadn't entered my life and I will always cherish them for that. I wish I could track them down and thank them personally, but it's not going to happen. I have accepted they're gone for good and I accept the good they left behind.