jmgoyder

wings and things

Dec 3

When every day becomes yesterday

by jmgoyder

When Anthony was home yesterday he kept talking to the television. I would come in and out of the kitchen where he was sitting (his favourite spot) and enter an already-there conversation. I was busy with washing and other chores (something I continue to do even if Ants is home, just to keep things normal-ish), but every time I came back into the kitchen he would be talking to one of his deceased brothers, or to the now-dead stove, or to the dogs on the table (hallucinations).

Ming cannot stand it – he just can’t. He says, “Mum, I love Dad but I just can’t tolerate him!” I understand his point of view; after all, he is only 19 and his dad is nearly 78. On the shy side of 50, I am in the middle of this all the time so, when Ants comes home – and I do this as much as possible – I leave Ming with him while I go to the toilet to cry. No, not self-pity – just so hard to remember how good it once was and how bad it is now.

I miss all of our wonderful yesterdays just as much as Anthony does. But Ming doesn’t remember and he has no recollection of Anthony ever being well. Every day, lately, he has asked me for a hug and every day I have given him a hug, even after our ferocious arguments, about the car accident, about many things….

Sometimes it is hard to be positive but I have enormous faith in both Ants and Ming and I think that is reciprocated to me. I hope so.

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Family Friendship Grief Happiness LOVE STORY Parkinson's disease Parkinson's disease dementia Teenagers

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Nov 30

Apologizing to a microwave

by jmgoyder

Now that Ming is living in his renovated shed (which, by the way, is much more spacious than our house!) I am mostly alone. Of course I am out most days, visiting Anthony, or bringing him home, or taking him out, or running errands, or visiting friends but most of the time I’m home alone.

Don’t get me wrong – I actually love being alone and always have. I never feel lonely, have lots of fantastic friends and family that I see regularly and Ming wanders over from his shed frequently (in search of food!) So being alone does not equate at all with being lonely – well not for me anyway.

However, my aloneness was brought into sharp focus this morning when the microwave beeped for the third time (rather impatiently I thought) to tell me that my coffee was ready. I rushed over to it, saying “Sorry, sorry!” Then, as I took my coffee out, I said, “Thanks!”

It was only as I took my first sip that I realized what I’d done, and couldn’t stop laughing.

You will be relieved to know that the microwave didn’t answer me.

Embarrassing moments Family Happiness Humour Parkinson's disease Parkinson's disease dementia Teenagers

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Nov 29

Tick tock

by jmgoyder

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).

Family Friendship Grief Happiness LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers

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Nov 28

The ‘like’ button

by jmgoyder

When someone posts something that is heartbreaking, pressing the ‘like’ button seems an odd thing to do but I think most of us realize that the ‘like’ button is to show we care, not that we like what they are going through. Recently I have read a few posts and comments where the issue of the ‘like’ button is discussed. For example, “I didn’t press the ‘like’ button because I like what is happening in your life, but I just wanted you to know I care.” Now even though this is probably understood by most bloggers, I have also heard of people objecting to their grief-stricken posts being ‘liked’. So I think this is something WordPress and other blogging platforms could address by adding another button that indicates that the reader feels something more than ‘like’ for a post that is sad, or anxious, or bewildered, or despairing.

But what button to add? It would have to be a single word of course and I have wracked my brains and seen others’ suggestions. ‘Hugs’ seems to be a popular idea but some people wouldn’t like that because it seems a bit intimate. ‘Love’ is another possibility but then it might seem like the reader loves the writer’s anguish. ‘Understand’ might offend the writer of a sad post because it might imply that you know what they are going through when of course you don’t. ‘Hope’ is too insipid perhaps? ‘Encourage’ might sound like you are not taking their predicament seriously enough. ‘Bravo’ might seem abrasive; ‘Prayers’ won’t work for non-religious people; ‘Wishes’ is too ambiguous; ‘Care’ isn’t a strong enough word; ‘Support’ is meaningless when you can’t actually offer any beyond words; and ‘Sorry’ is often inadequate and can sound quite trite.

Would the word ‘Heart’ work?

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Nov 27

Honiara needs a chiropractor!

by jmgoyder

My brother, Brinsley Lane, is looking for a locum for his Honiara-based chiropractic practice so that he can come home to his family in Western Australia. In his own words: “Warm Pacific adventure awaits. Chance of a lifetime for someone needing that sea change they’ve been talking about. Contact brinsleylane@gmail.com”

Honiara is the capital city of the Solomon Islands, a beautiful place just northeast of Australia. Brin established the practice two years ago and now sees an average of 100 people per day so, despite wanting to be here with his family, especially his daughter who is recovering from injuries sustained in the recent car accident, he can’t just up and leave, obviously.

So, if any of you know of any chiropractors who might be interested, please share this with them, and get them to contact Brin on the email provided above. Incidentally, Brin also has a blog at

brinsleylane.wordpress.com

Thank you!

blogging Family Uncategorized

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Nov 26

Breaking nursing home rules!

by jmgoyder

For the last couple of days, I have brought Anthony home for the day. On Sunday, friends came over to see him/us so that was fantastic but yesterday he opted for a quiet day with just Ming and me. Today, I just went in late (4pmish) and grabbed him to come with me to do a few errands: groceries, returning dvds, pizza for Ming etc.

So, as I was trying to get him to walk to the door and outside to the car, I asked the couple of nurses who were helping us if they liked pizza. Their eyes lit up (as mine do when I hear ‘pizza’) so I said I was going to get pizza for Ming and I would love to bring them some too. Then, a very interesting conversation ensued:

Nurse 1: We’re not allowed to accept gifts.
Me: It’s not a gift – it’s pizza!
Nurse 2: I like pepperoni.
Me: What is the problem? I hate these stupid rules.
Nurse 1: Well, if you give us anything, and we accept it, it could be misinterpreted as bribery.
Me: What?
Nurse 1: No, no (laughing) we know you but the rule is that if we accept any gifts from relatives we might be in trouble because it might seem like the relative is doing it to get better care for their loved one.
Me: OMG but I bring chocolates and pistachios and olives in all the time and share it around. Does everyone think I’m a briberist?
Nurse 2: Of course not! We know you but we just have to be quite careful about this sort of thing, because of the rules.
Nurse 1: I like Hawaiian.
Me: Okay, so when I come back with Ants, I’ll just put the pizzas at the desk anonymously?

Both of the nurses nodded and we all had a chuckle but as Ants and I drove around town doing my errands and then ordering the pizzas, I asked him what he thought about the bribery nonsense and he said, “That’s what it’s like at the school, Jules.” (He always calls the nursing home ‘the school’).

Anyway, I wasn’t taking any of this seriously until we got back to the nursing home. The first thing I did was to place three large pizzas on the nursing desk (nobody was there so my secret was safe). Then I went back to help Ants into his room and chair. I turned his light and television on and then we shared a bit of his own pizza, then I left.

On my way out, I heard one of the kitchen staff quizzing Nurse 2: Where did those pizzas come from?
Nurse 2: I have no idea – they just appeared! But I am really grateful.

As I leapt to the exit door for a quick getaway, Nurse 2 called out, “Have a great evening, Julie.” I just hope that when they eat those pizzas, they also eat the boxes because my fingerprints are on them!

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Nov 23

Ming’s scoliosis decision

by jmgoyder

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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Nov 21

Not sure….

by jmgoyder

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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Embarrassing moments Family Grief Teenagers

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Nov 20

Bravo to my family

by jmgoyder

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

Family Friendship Grief Happiness joy Teenagers

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Nov 19

To my son, Ming

by jmgoyder

I have never loved anybody as much as I love you.

Family LOVE STORY

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