jmgoyder

wings and things

Easter Saturday, Parkinson’s disease and a picnic

Today, Ming and I picked up Anthony from the nursing home, took him out to my mother’s place, picked her up, then went down to the foreshore near her home for a picnic. It was a perfect day, sunny, but with a breeze, so we grabbed some takeaway (sushi and chicken rolls) and managed to find a gazebo right near the water. Now that Ming’s back has half healed from his second spinal surgery, he insisted on doing all of the maneuvering of Ants in and out of the car and the walker/wheelchair we recently bought, and, except for when we picked Ants up, he was pretty mobile – bonus!

After our main food, my mother and I went to the nearby shop and bought ice-creams for dessert, two banana paddlepops for Ming and me, a magnum for her and an ice-cream sandwich for Ants (he loves these). We were surrounded by seagulls of course and Ming, like a little boy, loved chasing them away.

Then we went for a long drive around the estuary until we got to a semi-hidden beach where Ants said he wanted to have a swim. Having never swum in his life, this was a funny request, so we simply drove back slowly, dropped my mother off at her house, then headed back to the nursing home.

On the way back, Anthony became even quieter than usual, knowing, I guess, that the outing was nearly over, so I turned the car radio up and the three of us bopped a bit, with Anthony tapping his leg and Ming complaining that the radio station was too mainstream and that Ants and I had no taste – brat!

Once we had delivered Ants back to the nursing home room, and got him comfy in his armchair, he was showing signs of fatigue, confusion and the kind of misery that sometimes hits him when we depart. He loves the way Ming and I banter, so when we leave him, despite turning the television on for him, I can see how the silence of our absence hits him. I can see it in his face when this happens because he raises his chin a bit, sort of defiantly, and gives us a glare that is a mixture of love and grit.

He knew that Ming and I were going to a barbecue tonight at a friend’s place and that it would be just as impossible to take him to this as it would be to have a swim in that beautiful ocean. Usually I don’t tell him about these social occasions, so that he doesn’t feel left out, but this time I had to in order to explain why we had to go.

If it weren’t for the various photos I’ve taken over the last few years, I probably wouldn’t see as clearly how much Anthony has deteriorated. The photo I’ve included here is from a bit over two years ago when we were still able to do the restaurant thing easily. Back then, he was more upright, more mobile, more able to eat using a knife and fork, more vocal, more himself. Now, going to restaurants or to people’s houses for a sit-down meal is very hard because, with PD, he is only able to focus on one thing at a time (one voice, one activity, one sound), so the picnic idea was much easier.

When we picked Anthony up this morning, the nurse-in-charge said he had become aggressive again, punching out at the carers, and swearing (totally out of character), so I promised to have a word with him and I explained to her that it is part of the dementia engulfing the PD. She nodded in understanding but when I mentioned it to Ants he just muttered that he had to fight because he is often kidnapped.

I am sad, yes, but no longer ‘tragified’ because what would be the point? This is only going to get worse, not better, so the four of us just have to accept this and do the best we can (I include my mother in this foursome because she is a rock and very much a part of our own little family dynamic).

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The maternal conundrum

Mothers

Sometimes we want them to get lost, stop interfering and giving advice, and to stop implying what we should do/be.
Other times, we limp, bruised and bloodied, into their laps, for the kind of hugs that nobody else can give.

On my bulletin board I still keep a note that Ming wrote some months ago – “Stop mothering me!” At the time, he was referring to my overbearing attitude to his diet, so I stepped back from this, finally willing to let him fend for himself.

But. tonight, it kind of went the other way because Ming was asking me why I had taken so long to be okay again, since the car accident. My response was sarcastic: “Not sure, Ming – might have something to do with the fact that five kids were injured?”

Ming: But, Mum, they are all okay now and I always knew they would be!

Me: Well I didn’t know for sure, so I was terribly worried.

Ming: So, Mum, please can you stop worrying now? They are all good!

Me: Okay. I am still reeling from the court case result and can’t quite believe it, Ming.

Ming: Just accept it, Mum – it’s over now. Stop (s)mothering me!

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Effervescence!

Ashtyn is my eldest niece and she has the gift of effervescence in spades. Recently, she, and her Scottish beau, were married in Edinburgh but have now returned to Australia to settle in Perth.

There is something so sparkling about Ashtyn that, no matter what anyone else is going through, she lightens it up with her smile, her positivity and her wisdom. As her aunt, I respect her and applaud her for all of her accomplishments and for her ability to love each individual in her ever-expanding family, not just with sentiment but with a roll-icky humour. She actually reminds me sometimes of my own father, “Dad” who died before ever seeing her. Dad was mostly pretty serious, but when he broke out into humour it was amazing.

Ashtyn’s humour is contagious; she has a way of making you feel good even when you are feeling bad and I now realise that she is the epitomy of effervescence.

Happy birthday, Ashtyn!

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Dancing

The following poem was written by my mother, Meg, before any of us knew the outcome of Ming’s court hearing on Monday. I thought she’d written it for Ming and that he was the gymnast, then I thought it might be for me because my hope was faltering; then I thought it might be for Anthony whose mobility is deteriorating; then I thought it might be for the various family members who have been affected by the car accident; then I thought it might be for all of us – everyone….

I now think Meg’s poem was all of those things, but it was mainly for our big, loud, dancing Ming!

Focus. Meg. April 14, 2014

A gymnast
On the balance board
Looks steadfastly
Towards that spot
Far in the distance
And his body
Perfectly in tune
Glides smoothly forward
Step by step
Unfaltering.

The tiniest distraction
Left or right
Behind ahead
Above beneath
He falls

Resolves next time he mounts the board
To fix his eyes
On One who beckons.

The board seems now so wide and safe
His toes spread out
His balance now regained
Secure.
A joyful happy jig.
The tightrope turned into a dance floor
Music
Laughter
Joy.

Thank you, Mother.

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PS. I think I need to get a new photo of Ming dancing because I am quite sure I have posted this one before; I also need to throw those obscene green shorts (that I bought Anthony for a joke over 20 years ago) in the trash. Why Ming insists on wearing them constantly is beyond my comprehension!

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Question: How many times do you begin again?

Answer: Every single day.

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Ming's Christmas present 2010 - 'Black beauty'

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Julie and Woody best

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EVERY
SINGLE
DAY

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The Verdict

Good news! In fact it is the best possible outcome and even the lawyer is gobsmacked. Today, in court, the police reduced Ming’s charge of “five counts of dangerous driving occasioning bodily harm” to “one count of dangerous driving” and they deleted “bodily harm” from the charge (this was the most surprising thing since the accident did cause bodily harm).

The penalty is a $500 fine plus courts costs, and Ming loses his driver’s licence for three months. Considering he was facing the possibility of a $15,000 fine, a two year suspension of his licence, and maybe jail time, this is absolutely amazing!

Thank you so much for all of the comments on yesterday’s rather melodramatic post (which I have now edited into something less melodramatic ha!) I am also deeply grateful for the support and prayers of our family and friends, the character references for Ming, and for your patience with my moodiness.

And to God: thank you for restoring my faith, and my breath, and for the fact that we didn’t need the $4000-per-day barrister after all!

Tonight we are celebrating my eldest niece’s birthday and she was sure it would be a double celebration with good news for Ming. I wasn’t so sure and my optimism was limpy.

Then, this morning, at the lawyer’s office, when he told us that there was still no answer from the police and said it may well be another adjournment, my optimism tripped over and fell. “It’s like the Samuel Beckett play, Waiting for Godot“, the lawyer said, and Ming guffawed while I tried to smile. An hour or so later, Ming and I were sitting in the court’s waiting room rather listlessly when the lawyer came out of the courtroom itself and beckoned us in, whispering, “Godot has arrived”, then he went to talk to someone else. I looked at Ming with wide eyes:

Me: What does that mean?
Ming: Duh, Mum, the charges have been reduced!
Me: But why can’t he just say that?
Ming: Because he likes to speak in metaphors.
Me: But are you sure?
Ming: Yes!
Me: Well I need to hear the actual words.

And half an hour later, I did. Yeeha!

It’s over.

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Court case

Tomorrow, Ming and I go back to court for the third time since the car accident last October. (For those who don’t know, Ming lost control on gravel whilst taking four cousins and a friend on a bit of a joyride on the back of his new ute/truck, and all five children were seriously injured.)

Since then, all involved have been through different versions of hell, but, with the five children healed now, life is beginning to resemble the joy of before-the-accident instead of the trauma of after-the-accident.

Ming (now 20 – he was 19 at the time of the accident) has, over the ensuing months, taken full responsibility for this accident and now awaits tomorrow’s decision from the police as to whether the charge of five counts of dangerous driving might be reduced to one count. Obviously my whole family, including the injured children, are hoping for that latter but Ming and I are now prepared for whatever happens.

Actually no! Ming is prepared, but I am terrified. If the charges against him are reduced he will plead guilty – easy – but, if the charges are not reduced, his lawyer wants him to plead not-guilty in order to negotiate further.

Several times, over the months when the children were in neck and spinal braces, and leg, arm and wrist casts I despaired and sometimes became uncharacteristically angry and, in retrospect, my family coped very well with my unfocused aggro.

I only expressed anger towards Ming once because I knew how traumatized he already was. It was a few weeks after the accident and he and I were in the car and I said, “But why, Ming – why did you take the kids for that joyride – WHY?”

At that hint of blame in my voice, Ming began to scream, then sob. Since that day, he has been calm and taken the whole legal process in his stride, whereas I have been on tenterhooks. Obviously his remorse goes without saying.

I don’t think I can go on with this tonight but glad I have written some of it down.

Wish us luck tomorrow in court!

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Perfect!

Ming and I are going to Perth tomorrow to stay overnight with my niece and her husband in their new house and that’s the exciting part of the journey. The next day I have my first ever appointment with a skin specialist to suss out this pompholyx and, hopefully, get blood and allergy tests.

Unfortunately (and interestingly, having read a few blogposts about how hard it can be to keep up with blogposts) I will probably succumb to blog-fatigue. So, if you don’t see me on your blog, that is why. Also, Ming’s final (we hope!) court hearing is happening next Monday so this is a bit distracting too.

I took Anthony for a long drive on Sunday and it was a wonderful success; his new telephone is working for him better than the previous mobile; and I have rather belatedly discovered the secret to happiness in that it is something you create rather than wait for.

Oh! Ming just said he is auditioning for a part in some sort of production that requires a 20-year-old male with short hair who can deliver “a menacing look”.

Perfect!

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Weekend

Having a bit of a weekend break.

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Oh how much I miss the dancing days!

I was going to write something both poignant and eloquent but have hit a blank tonight. Nostalgia I guess. I tried to show Ants how to use his new phone to no avail this afternoon. Then, just a moment ago, he actually answered it!

Anthony, Julie and her mother, Meg, on wedding day 1993

A Goyders Dardanup

The treasure chest of memories of my dancing days with Anthony (and Ming too) is a constant source of absolute joy in the face of what we are going through now. This afternoon Ants was more frail and confused than I have ever seen seen him and I got a bit of a shock.

So, yeah, I miss the dancing days.

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