jmgoyder

wings and things

Tick tock

Anthony has a lot of antique clocks – a magnificent grandfather clock, three carriage clocks, two mantle clocks and one cuckoo clock. All of them chime on the hour and some on the half hour.

Well they used to.

Ever since Anthony went into the nursing home, all of the clocks have stopped. Mostly this is because Ants always did the clock winding and he never really taught Ming and me. Also, once Anthony wasn’t at home any longer, there didn’t seem any point any more, and letting all of the clocks stop seemed a natural reaction to his absence. My love of their chiming diminished in equal proportion to my increasing grief (if that makes sense, which it probably doesn’t!)

I finally got my act together a few months ago and invited a clock man over to have a look. He serviced all of the clocks, got them going again and showed us how to wind them without overwinding them and pronounced one of the carriage clocks as too far gone. Well, Ming and I lasted a week, so all of the clocks have once again stopped.

Oh the guilt. And the silence! If you are used to the constant chime of clocks, the silence is like a thrum of nothingness. I miss the noise of the clocks, the complaints of people staying with us who said, ‘how can you stand it?’ I miss all of those hundreds of Sundays when Anthony wound each clock with such joy until he forgot how to.

The other day, when I brought him home for the day, he tried again with his favourite clock.

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It didn’t work.

Tock tick (no, that is not a typo).

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Ming’s scoliosis decision

Yesterday Ming made the decision to have the surgery on his spine and we will know when in the next week or so. The decision was not make lightly and no longer has anything to do with aesthetics (originally he was more upset to see that his straightened spine was now five degrees more crooked than it was post surgery in February 2012.) Now it is more to do with the ache at the site of where he fractured a length of titanium when he lifted something too heavy on our farm some months ago.

Apparently the fractured piece will not be replaced but instead will be mended with some sort of screw, then anchored to neighbouring vertebrae with more titanium and surrounded by bone from the bone bank. The operation will only be two hours this time, with no spinal cord monitoring required (the original surgery was around nine hours).

There is no guarantee that he will be straighter but there is hope that the pain will go away. The surgeon is now insistent that he stops all manual labour, not just now, but forever, which is something we were naive about last year. I guess we thought that once he’d healed he would once again be able to do anything he wanted to do; we didn’t understand the foreverness of his scoliosis condition, or perhaps we just didn’t want to accept it.

As with everything, Ming is coping much better than I am with the prognosis – surgery or not – but I am doing a very good job of hiding how sad I feel that my great, big, strong footballing, motorbike riding boy will never be able to bend, turn, lift etc. like most people can. So, yes, I am a little tragified but he isn’t and is very philosophical, which is great.

It’s all going to be fine.

Ming's Christmas present 2010 - 'Black beauty'

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Not sure….

Tomorrow, Ming and I will go up for our final appointment with the spinal surgeon before corrective surgery is scheduled for the titanium fracture Ming caused by lifting something too heavy for his ‘new’ back. (He had surgery last February to correct a 75% scoliosis).

I am in two minds about further surgery. Okay the titanium fracture was a shock (mainly because I/we didn’t think titanium was breakable), but also because Ming has been in pain ever since – not agonizing pain, more crampy, achy pain if he has to twist, turn, lift etc.

Ming wants the corrective surgery, to hopefully solve the pain problem, but he also wants to be straight again. After the scoliosis surgery, his spine/scar/back looked almost straight and he was delighted in a double-whammy way; he was tall again and his asthma abated. He was amazingly accepting of the fact that he could never play football again, or go trail-biking on his motorbike. In fact, he has been told not to run, cycle, or even play volleyball or badminton because of the jolting effects these activities might have on his wonky back.

Now he is crooked again and he doesn’t want to be crooked.

The surgeon has already said that corrective surgery may not work so tomorrow I will be ready with some specific questions. Maybe we will opt out of further surgery – I don’t know. It has to Ming’s decision now that he is 19 – not mine.

I’m not sure….

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Bravo to my family

I have been refraining from talking too much about about the accident for the sake of my family’s privacy but it was an enormous relief today to welcome home my niece finally out of hospital yesterday. My brothers and sister-in-laws, and their older children (not involved in the accident), and our mother, have all been through hell of course. Ming, Ants and I all saw my niece in her brace, and her best friend (also in accident), and we even had a few laughs.

The previous week, Ming and I ventured down to see my younger brother and sister-in-law’s three children and it was wonderful. The children were so hilariously philosophical and my sister-in-law cooked a better meal than I have ever cooked (according to brat, Ming!)

Of course, physical recovery for all five children will take time but the fact that they are all out of hospital and home again is a wonderful thing and the idea of moving forward now seems possible. For many of us, the psychological and emotional damage will probably take longer. Children have a much better resilience than adults – thank goodness!

As the children don’t read this blog, I just want to say here how much I admire my brothers’ families – each, single individual has contributed to the love we share and, even though this is getting overly sentimental, I just have to say that I feel blessed to have such a family.Our mother has been a rock and, weirdly, I have felt Dad’s presence throughout this horrible month.

Bravo to my family and bravo to Meggles!

Meg and nibbles

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The hand-shake

Yesterday, I was in Anthony’s room in the nursing lodge when a family member of his popped in to visit. To begin with, this family member and I were somewhat awkward with each other, which wasn’t helped by the fact that Anthony was having what Ming and I have always called ‘a wobbly’ where he can’t properly talk etc.

So I had to kind of ‘broker’ the conversation between the family member and Ants, which was so hard for me because, despite making myself willing to forgive several weeks ago, I still felt a residue of rage against this family member for having hurt Ants/us in the past.

But, as he went to leave, and shook Anthony’s hand, I suddenly, involuntarily, reached out my own hand to his and we exchanged a hand-shake. Clumsy words were exchanged but that doesn’t matter because that hand-shake meant that finally I have forgiven and can move forward now and, perhaps, the enmity might now be resolved.

Of course nothing is perfect but the fact that my hand-shake happened in front of Anthony is like a gift to both of us. Apart from Ming, this family member and I are probably Anthony’s favourite people historically – I don’t know. Many other family members and friends have made much more effort to visit or take Ants out etc. This particular guy is probably afraid, just as I am, that he is soon to lose someone he loves.

The hand-shake is a very useful gesture in situations of conflict, confusion, anxiety and despair – and happiness of course!

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What’s more important – to love, or to be loved?

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Yesterday, after doing hours of paperwork and three related appointments, I finally got to Anthony’s lodge at 5pm and something in his face lit up. “My beautiful girl!” he said (now that I am 54, being called a girl always works a charm on me). We gave each other the usual hugs and kisses and then I sat down to tell him the latest about my nieces and nephews, my Centrelink adventure and other things, and poured him a small whisky. I knew I couldn’t stay long as I had to get groceries before the shops shut, so he got a bit upset when I had to go. I managed to jolly him out of that somehow and left reluctantly.

At the doorway to his room, I paused, as always, and said to him, “I love you so much, Ants” and he said, “When you go I won’t have anyone to love.” So then of course I ran back to him for one more hug and he was okay, knowing he would see me tomorrow (which is now today).

After getting groceries, I headed for home with his words resonating and I realized, for the millionth time, what an amazing person he is to want to give love more than to receive love.

Ming, at 19, doesn’t really understand why I go into the nursing lodge, take Ants out for cake and coffee, and/or on my errands, or home on weekends.

Me: Because he is my husband!
Ming: But how can you stand it, with Dad like he is? It’s no fun for you and the psychologist said you’re supposed to be having a bit of fun in your life.
Me: Because I love him and I can make it fun now I’ve stopped succumbing to the sadness so much. Anyway, I like going to cafes and so does Ants.
Ming (bewildered): Okay, whatever.

One day, when Ming is married to someone (who I hope will be amazing!) he will understand something about love that I didn’t really ‘get’ until now: that the gift of love is found inside every moment that you give it and not in how much you receive it. I certainly didn’t see it this way when I was his age so why should he?

So to both my beautiful boys: I love you.

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I found out today that Anthony and I are ‘illness separated’.

photo credit to Jane Terren

Ming and I were at Centrelink (Australia’s social security service) this morning to pursue job possibilities for him now that he is not supposed to do manual labour. He is still working for our neighbours as a dairyhand but only for three days a fortnight, and with no lifting allowed. As many of you know, this is because Ming tried to lift something really heavy in our shed a few months ago and actually fractured some of the titanium in his ‘new’ back. He will be scheduled for further surgery in the next couple of months, after which he will obviously have to quit milking the cows for good.

So we were at Centrelink with a the doctor’s certificates and other paperwork that might help Ming claim some sort of interim allowance before and after the next surgery, when (whilst waiting for her computer to reboot) the beautiful woman serving us chatted with me about this and that and she took an interest in my own circumstances. As I had previously received a carer’s allowance when Anthony still lived at home, I was on the system, but she could easily see that I have had no income of any sort for nearly 18 months and haven’t been able to claim any social security help due to living on a farm (asset). She asked me about Anthony and, when I told her he was now in a nursing home, she said, “Well that means you are separated.” I said, “No, no!” Then she said, “It’s okay, I just mean you fall into the Centrelink category of ‘illness separated’ and, as such, you could probably do with some financial assistance.”

She then said she would do anything she could to assist us in our Centrelink pursuits. I was so grateful I nearly got teary and then suddenly she realized that Ming (whose Scottish name is spelled Menzies) used to play football with her own son and, even though she and I had never known each other back then, I not-so-instantly recognized her!

I am feeling a bit uncomfortable about lodging a claim for financial assistance but, on the other hand, Anthony and I have, like so many, paid a fortune in taxes over the decades, so why not? It’s difficult for me to get another job at the moment because I spend a lot of hours with Anthony every week – either here or at the nursing lodge; and it’s difficult for Ming to commit to another job until he knows about surgery (next appointment with surgeon in two weeks).

One of the things I am so grateful for is the fact that my beautiful, now incapacitated, ‘illness-separated’ husband, has had enough savings to sustain us so far. And that we are living on his/our beautiful farm.

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Parkinson’s disease dementia and night terrors

I have just gotten off the phone with Anthony for the third time in the last half hour. He is terrified and this is happening more and more often at around the same time of night. Tonight he thinks several people are trying to tie him up, that his house is being rummaged and wrecked, and that I am part of a conspiracy to hurt him. Ming and I have both talked to him and I have also rung the nurse in charge to tell her how distressed he is and that he is confused. She said they had tried to put him to bed (sometimes it takes two or three people) but he fought them all off. I told her he didn’t know what was going on and that we were seeing the doctor tomorrow to get emergency medication for this kind of hallucinatory agitation.

Our farm is a half hour drive away and I feel like I should sell up and buy a unit near the nursing lodge so I can be closer for these night terrors because for him to be this frightened is unbearable for all of us. I know/hope that in the short time it has taken to write this post, he will most probably be in bed and nearly asleep because in the end Ming and I managed to calm him down a bit – very hard to do over the phone.

The prolonged emotional agony of this disease, for all three of us, is like treading water in a strange and unfamiliarly large pool of murky water, and can change within the space of an hour. Earlier, when I rang Ants, he was fine and lucid and gorgeous. His words don’t come out very well any more so I was shocked by tonight’s frantic eloquence and his absolute terror. My feelings of helplessness are like jagged jigsaw pieces accidentally placed in the wrong box – futilely useless.

I love him so much.

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Opalescence

To my niece still in hospital:

Your name means wisdom.

As you wait, flat on your back, for healing, for the spinal brace to be fitted, for whatever comes next,
I have stopped eating garlic because I want to breathe out to you without stinking, even though we are 200 kilometres apart.

You have my freckles but you wear them like jewels. At your age, my freckles looked more like I forgot to wash my face after mud-wrestling. They’ve faded now but I hope yours never fade.

On your 14th birthday, the other day, when that grumpy woman wheeled your bed into the party room of the hospital, and told us off for lighting candles on your doughnut cake, I wanted to punch her in the face.

You told me to stop inboxing you so I did once I realised I had sent you 27 messages. Sorry about that, but I can’t seem to stop!

A celebrity kissed you on the cheek, your mother is a rock, your father is a mountaineer and you are, like your birthstone, a pure, shining opal.

Your nickname for me is AJ because I hate being called Auntie Julie. I love you for that.

I haven’t prayed for years but now I do – praying you will be okay, praying you will get the patience you need for the next months, praying for another private giggle, praying for every single tomorrow to be better than every single today.

Keep on opalescing, keep on being strong, keep on being you. You.

AJ

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The dangers of driving on gravel

It is nearly two weeks since the night of the accident in which my son was driving with four of his cousins and one friend in the back tray of his ute/truck. My family has learned so much from this, including the extent to which we love and respect each other. Responsibility for allowing the kids to go for a little ride has been shared and discussed, hugs have been exchanged, forgiveness has been a constant source of comfort to all I hope, but self-forgiveness is not so easy – not for me.

Even though I was the only one inside the house and didn’t know that my son had taken off with the kids for a second little ride, I should have already had a rule in place that this was absolutely forbidden. After all, it is against the law to have unrestrained passengers in the back tray of a ute. If I had had this rule in place, this wouldn’t have happened. Why didn’t I have this rule? Because it never occurred to me that my son would do this; he is such a cautious driver and has the reputation of driving like a granny! When they all came back from the first little ride and I realized they had been off the farm, I said to my son, “don’t do that again will you” but I should have said, “YOU WILL NOT DO THAT AGAIN!” If I had said that, this would never had happened. We are all struggling with our own ifonlys, but these two are mine.

What matters here is that, despite all five children sustaining serious fractures, with one still in hospital for some time, the longterm prognosis for all is full recovery, physically. Psychologically and emotionally, I think their recovery may be more complicated but as the young are so resilent, I hope and I pray that they will all unremember the terror of that night. For those in my family, who drove crazily around the outskirts of this country town, after my son’s panicked phonecall, looking for all of them, when they were only 2 kms away, the memories of our fear and horror will take longer to fade.

My son did a slow U-turn on bitumen, and was heading home again when he hit gravel and accelerated a bit, turning the steering wheel from left to right, just slightly, to give the kids a little thrill, and that is when he lost control and the ute fishtailed (I think); he tried to control it by braking, and steering it back, but nothing worked even though he was going less than 40kms.

If he had been speeding, hooning, drinking or a reckless person, this could have been worse. If he had coerced the children and snuck away for a little joyride, against our wishes, this could have been worse. The fact that everyone survived, and will recover, is the thing I tell myself each morning when I wake up to the horror of that night on constant replay.

When driving on gravel, be aware that your tyres only have half the grip they would on bitumen.
When driving on gravel, do not accelerate suddenly, even a little bit.
When driving on gravel, do not brake suddenly, even a little bit.
When driving on gravel, always go very slowly.

Nobody in this family – my beautiful family – will ever hop into the back of a ute again. Nobody in this family – my beautiful family – will drive without caution on gravel roads from now on.

My heart leaps with joy that everyone will be okay longterm, but his post is primarily to warn people of the dangers of driving on gravel, especially in a ute, and to never, ever, let your children get into the tray, no matter how much they want to, no matter how short the ride.

I am so sorry.

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