jmgoyder

wings and things

Calm before the storm?

Today Ming was charged with a crime (related to the car accident four weeks ago) and the case will be dealt with in court in the next month or so. After the police station, he and I went to the criminal lawyer recommended and we were given some very good advice. It has been a day full of expected shocks and unexpected shocks, like the possibility of jail, but Ming is okay with whatever punishment he receives for this stupid mistake in judgement. He is more concerned for the children who were injured in the accident and so am I.

It doesn’t bode well for Ming but neither of us care about that because it is nothing compared to the mix of relief and anxiety about all of the children’s recoveries and healing, especially my girl still in hospital, and my boy having to bend his leg for the first time tomorrow, and for the friend whose broken arm got infected, and to my two girls who are still in neck braces.

The fact that none of the families have laid blame on Ming has been a wonderful thing but that is irrelevant to the case and to our concern for the kids. I already loved those children but, until now, I didn’t know how much and it is up to the sky and beyond.

I hope that this temporary calm will make the inevitable storm more manageable for all of my family and us but obviously we will have to all wait and see in different ways.

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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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Note to blog friends


Thanks for all of your support. I am gradually resubscribing to the many blogs I have missed over the last months of various troubles. The last few weeks have been hell for my whole family, since the car accident, and with one niece still in hospital, the anxiety is high so obviously blogging isn’t on my priority list at the moment. I so appreciate all the good wishes, prayers and thoughts sent to my family, particularly to my nieces and nephew – thank you.
Juliex

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I just deactivated my Facebook account – what a relief!

I have never taken to Facebook as much as I have taken to blogging, however over the last few weeks I have become more and more obsessed with checking up on my family and friends to see if they are okay, to find out if they are happy or sad, to ‘share’ information that might be helpful etc. But this morning I realized that the level of anxiety I experience before going to FB is too horrible. I.e. What if I have said the wrong thing? What if they don’t reply? What if they are sick of me commenting on their situation? What if they just wish I would go away?

But it’s not just my insecurities that have influenced my deactivation decision; I am sick of the advertisements, the miserable media reports, the posts from people I have never heard of, the disturbing images, causes, and cries for help from people I cannot possibly help. One of the many strange things about FB is its strangerness.

I will probably hop back onto FB in the near future but at the moment I’ve just had enough – not of my family and friends of course – just of Facebook itself and its paradoxical facelessness. After all, I do have a phone number, and an email address, and have a bit more animation than my gravatar.

Also, I might now be able to get to my mountain of paperwork – bills, tax return etc. I’ll just check my emails first haha!

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From heart to heart: The Dr. Says

I have made many friends in the blogosphere, one of whom is Sandra Callahan. She is wise and funny and positive and she and I share some very similar experiences. We have supported each other through many ups and downs and yesterday she made a comment on my post that compelled me to rethink yesterday’s doctor’s appointment with Anthony during which he described his dreadful terror the night before as ‘a bit of fun’. Sandra said, ‘He must have been embarrassed by his behavior. I cannot imagine how scary it must be when he doesn’t recognize people and they are trying to force him to do things he doesn’t understand.’

Sandra’s comment made me realize that Anthony’s bravado with the doctor was to cover his embarrassment and, even though I was aware of this at the time, it didn’t really hit me until I read Sandra’s wise words. Of course he was embarrassed – to be confused, to have been terrified of nurses, to have possibly made a fool of himself, and to have worried me so much. Anthony’s ‘bit of fun’ was his way of covering up his embarrassment and I understand that much better today than I did yesterday thanks to Sandra. She has once again helped to sharpen my sense of perception with her amazing empathy.

Our hearts have a lot in common except for one fundamental thing: mine is still beating loud and clear and Sandra’s is failing. She has congestive heart failure and is dying. But she is also living to the utmost, encouraging people like me and talking honestly about dying. Her book is now available and here is the link.

From my heart to your heart, Sandra.

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“I’m so much better, Jules!”

Today I picked Anthony up from the nursing lodge to take him for a doctor’s appointment to get some of his never-ending skin cancers burned off with that ice stuff. Having been a farmer all his life, out in the full sun before the days of hats and sunscreen, he develops many of these on an almost daily basis – new eruptions from old sun damage – on his arms, face and back mainly. Even though it hurts, Anthony has a strange liking for the procedure, mainly because he really likes seeing our doctor and so do I.

In the car on the way to the doctor’s office I asked him did he remember what had happened last night and he surprised me by saying yes.

Me: Well I think we should tell the doctor because this seems to be happening more often and you sounded so terrified.
Anthony: I didn’t want to be ordered around.
Me: So you fought the staff, told me I was part of a conspiracy against you, thought you were being tied up, and frightened the hell out of me.
Anthony: They deserved it.
Me: But they were just trying to put you to bed! Was anyone being nasty or pushy?
Anthony: Not really.
Me: So why did you fight them?
Anthony: Oh, just for a bit of fun.

AAARGH!

Before I go on, I should explain that this kind of conversation flows much more smoothly on the page than it does in real time. In real time, there are a lot of pauses and sometimes Anthony’s voice is so soft now that I have to say, “what?” or “say that again?” before I understand what he is saying.

Anyway, his ‘bit of fun’ comment made me laugh, until I became a bit cross.

Me: So you think it’s funny to torment the nurses and make me cry for worrying about you.
Anthony: The first thing yes but not to you. (He reaches out and pats my knee as we pull into the doctor’s parking lot)
Me: Well I’m going to ask the doctor to prescribe you with something for when this happens again.
Anthony: So you want to drug me.
Me: Nooooo! I just don’t want you to have one of these terrified episodes again with nothing to calm you down. Even I take something like that now and then!
Anthony: Yes, but you probably need it.

He has a point there!

When we went into the doctor’s office, he already had his ice-spray thingy in his hand like a weapon (a little joke he and Anthony share), but I told him that our visit was two-fold and then described last night’s incident, including Anthony as much as I could, despite his point of view being different from mine. He, too, thought it was funny when Anthony said it was all a bit of fun and Anthony’s eyes did that rare twinkly thing and he nearly smiled.

A new medication was prescribed, several skin cancers burned off and we left feeling as if we’d been on a social visit. By that time it was early afternoon, so I suggested we eat at a restaurant but Anthony wanted MacDonalds (most unusual!) So we got burgers from a drive-through, went to a park and ate them in the car (much easier than getting Ants in and out of a restaurant), then went to a bakery and bought a fancy tart which he vacuumed up, and a big chocolate cake for the nurses. By the time we got back to the nursing lodge, he was exhausted.

Okay it is now nearing the time I usually ring Anthony to say goodnight. The new pill won’t be available until tomorrow so we may well have a repeat of last night’s situation but this time I will be ready and I won’t let either of us be disarmed. I have to be prepared for the worsening of Anthony’s condition even though every single morning he says to me, “I’m so much better, Jules.”

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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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Embarrassing moments 2

A few weeks ago I had to get help from a computer technician, a surveyor, and a telecommunications antenna installer for various jobs. All three of them had the name Chris, a name I really like, but a name that I will, from now on, always associate with confusion.

Once Antenna Chris had attached my no-longer-mobile phone to a dock to an antenna placed on our roof, I was relieved to once more have a working telephone (since the land-line had worn out, literally). So when Surveyor Chris (who I hadn’t yet met) rang me not long after Antenna Chris had gone home, I raved on about how wonderful he was and thanked him profusely until I realized I was talking into a strange silence. Thinking I had another phone problem, I said, “Chris? Are you there?” and Surveyor Chris said, rather hesitantly, “Yes, but I think you think I am someone else?”

An hour or so later the phone rang and it was Computer Chris to see if he could come over the next day to finish up. Once again, I thought it was Antenna Chris who had left the antenna cord dangling until I tested it out and he had planned to tidy this up by attaching the cord to the wall with a bit of plaster. So I said that would be great and raved on about how wonderful he was and thanked him profusely until he interrupted me by saying, “I don’t know anything about the antenna – I want to finish up work on your laptop.”

Just for the record, I do not have a crush on Antenna Chris; it’s just that I think he is every other Chris.

Surveyor Chris is yet to ring me back.

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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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