Christmas Comedy

If it wasn't Christmas Day it wouldn't have been such a drama.  The day started well.  The sun was up long before me and the weatherman promised it would  be warm to hot, but not too hot.  It is after all Perth in Australia and we are well into our first month of summer.

The night before I had prepared, cooked and arranged everything from table decorations to chocolate mousse.  This morning the list in my head had me vacuuming and cleaning the bathroom and toilets.  I showered and woke Merv and Mel.  Christmas greetings of kisses and hugs followed by breakfast and dressing before opening their presents.  The late John Lennon sang his famous Christmas tune.  Nothing unusual there.

Then the gremlins came out to play!  I opened the fridge and it was dark inside.  No welcoming light.  It's Christmas Day; a blown light globe is not a problem.  Not until I heard Merv calling out from the lounge.  The TV had stopped.  I knew what the problem was.  I ran out of the house to the meter box  to flip back the RCD switch.  It wouldn't budge!

Back inside the house I turned off switches and pulled plugs.  Back to the meter box but there was no joy.  I ran around the house pulling plugs in bedrooms and turning off the Wi-Fi.  I sigh, run back outside but still there is no joy.  My mind races to the last time this happened on a Saturday night.  I had rang a local electrician and he wanted $300 to come out and have a look!  I hung up on him and fixed it myself.  It it's $300 for a Saturday night I started to sweat at what a Christmas Day call out would be.  I take a grip of myself and figured I was missing a switch somewhere.  I tried the microwave which has its own cubby hole.  I stood on a chair with the large awkward appliance balancing against my shoulders while I use a wooden spoon as my extended arm to turn off the switch on the back wall.  I slide it back and run outside.  It's not the microwave. 

I stand still but my mind is racing.  'Cupboards,' my mind screams and I flung open the door which houses the dishwasher power point.  I sigh with relief.  There is water dripping from the bench above onto the power point.  I pull the plug.  I run to the meter box and flip the RCD.  Yes, I have power!

I then run around the house plugging in and turning on every power point, except of course the dishwasher.  Merv settles down and watches the TV again.  It's only 9:30am, too early to open a bottle of wine, I make coffee instead.  I have lost 15 minutes but it's OK.

My mobile buzzes and Dustin explains he will be late to pick up Mum.  He has left Grace's present at home.  I gulp my coffee and ask why he hadn't put the present next to his car keys.  He explains he had and he continues to give me a minute by minute account of his actions.  I don't have time to listen and cut him short.  I toy with the idea I can pick up Mum and then pick up Vicki while cooking the turkey, preparing morning tea (most of the preparation had been done last night and the presentation on plates was all that is needed).  I already sound flustered!

Mel is peeling, trimming and cutting up vegetables.  The potatoes are finished and the turkey is in the oven.  Hours later I realise I had forgotten to cover it with foil but by that time it is too late.  Needless to say the turkey was moist and tender.

I throw the morning tea onto plates and platters and arrange them on the table.  It looks OK.  I am ready to leave if necessary but I haven't yet swept the front path.  Our huge ponytail plant flowers prolifically just before Christmas. The bees encircle high above while the pollen loaded flower puffs flood the paving and cling to the doormat.  Yes a hazard for the elderly and disabled.  I get the broom.

I ring Dustin, a miracle has happened and he has made up 15 minutes.  I sigh again and finish my cold coffee.

I finish prettying the table and leave Mel in charge of Merv while I shoot out to pick up Vicki.  She is over 30 minutes away.  That is an hours round trip and however long it takes for her to be ready.  I arrive to pick her up and the staff are not expecting me!  I had rang the day before with specific instructions.  Vicki greets me and within 15 minutes she is in the car and we are heading home.  We chat as we drive.

It is now almost 11:30am and I remember the turkey is cooking (without the foil), the potatoes are prepared but not in the oven.  I sigh, almost time for wine.  As I enter the house to get the wheelchair for Vicki I hope everyone is enjoying morning tea but I find morning tea is untouched.  I lose my cool. Will nothing go right this morning?

Vicki is on the ground on the driveway.  Family  members had attempted to help her out of the car. Why didn't they wait?  I have transferred Vicki many times, I know what works for her.  Vicki is shaken and unhappy.  We get her into the wheelchair and in the house.  Everyone is rather sheepish after my outburst and make their way to the table.  Poor Merv is sitting in his Lift chair and can't move.  I had forgotten to turn on the power point for his chair.  I turn it on and leave him to get up by himself.  I grab the bottle of wine and a glass.  Better not drink straight from the bottle! While everyone makes coffee (I ask for one also) and eat cake, biscuits and cheese I busy myself, grabbing the turkey out of the oven and pushing in the potatoes and pumpkin. Done.  It will be awhile before lunch, which is OK, morning tea has finished just before 12pm!

We play 'Secret Santa.'  Everyone has fun, a giggle and will take home a present. Mum and Vicki swap their presents for someone else's which is more suitable for them.

I settle for another glass of wine but stop there, I will be back on the road in a couple of hours.  We finally have lunch at 1:30pm after chatting to family members on the phone and watching taped Christmas Carols on the TV.

Merv gives thanks for our food before we grab our neighbour’s bon-bon and together pulling and yanking as it explodes sending paper hat, joke and plastic trinket over the table and becoming lost on the floor.

The turkey is tender, the ham is moist.  Dinner goes ahead without a hitch.

We chat happily enjoying each other's company.  This is what Christmas is all about; family
enjoying time together.  It's not long before I am taking Vicki home.  Dustin and Grace take Mum home.

It has been a lovely Christmas celebration.

Precious Time

She lay on the mattress which was on the floor.   I know why Merv's sister has no bedframe, just a mattress.  A practice to prevent her from falling but it’s not so easy to get up! 

I sat down next to her and held her hand.  It was her 64th birthday and the day had been long for her.  She had many visitors and staff call in to celebrate with her today.  There were flowers, a white bunch and a purple bunch.  I smiled and presented her with an orange and yellow flower arrangement, specially made for her by my local florist. 

She held my hand.  I could tell she was tired and wanted to rest.  We chatted.  Mostly it was me who chatted while she listened to me nattering away.

She grabbled for a sheet of paper which balanced on her knees.  She gave it to me and said it was for me.  A large square of orange craft paper with the words, 'To Pam' scrawled on it.  I was as pleased as punch.  I could see she had carefully thought it out and with a little help from staff had glued on butterflies, angels and baubles.  It is beautiful.  I was very touched.

Each time I visit I bring her presents, feed her at Christmas and Easter never expecting anything in return other than her company and the joy of sharing time with her.  With HD, time is precious for her. We never know when she will be taken from us.

Today was a special day for both of us.

It was a day of significance.  I had promised to bring Grace my future daughter in law with me.  A promise she had remembered. 

I am so pleased they have met.

Techno Savvy

There was no mention of it on the TV news but it would have been a worthy good-news story. 
I had imagined the headline; 'Great Grandmother and Son in Law (with disability) embrace new life!  In the very same week my Mum of 84 years and Merv each received their own iPads.  Neither of them have used a computer or tablet before but both of them have excelled in such a short time.
After almost twelve months Merv's funding had been approved and his wheelchair, iPad and accessories were finally received.  Nothing is quite that simple!  It had involved months of training on the speech app, Proloqu2go.  To transfer the information from the iPad belonging to the speech pathologist to Merv's iPad we required two speech pathologists and two hours of time.  My wifi proved slow but it finally coughed and spluttered with encouragement from  iTunes on my home computer.  Finally the speech app was downloaded on Merv's spanking new iPad.  The speech pathologists said their goodbyes and we were left together in an empty house staring at the new addition to our family.

'Email,' I muttered wildly adding information which continued to be rejected.  A little Google research and after numerous false starts Merv had his email address up and running.  Another milestone. 

Music was next.  Merv is a fan of most 60's and 70's music.  We downloaded 30 Elvis songs, a Cher album (I didn't even know he liked Cher!) and we did a little iPad sharing, downloading  a couple of my albums.
Merv's hand is poised with his fluorescent green stylus.  He is a keen student.  I know it's going to take some time before he is confident to be independent with it. 

It was just coincident that Mum also received her iPad the same week.  There was no funding available for her and she paid for her own.  Mum has been using a typewriter for many years to send letters to relatives in the UK.  Each letter takes about 5 days to arrive overseas but firstly you have to put it in a mailbox!  Now she types out an email, presses the send button and it's almost there!  Not only is Mum sending emails to everyone she is surfing the net and playing all types of games including Candy Crush.  A modern day Great Granny!

I am very proud of both Merv and Mum, two very unexpected techno savvy everyday people of note.

Merv singing along with Elvis on his iPad

 

Pain of Comfort Food

Merv hasn't had a sick day in four years and I'm not far behind.  At least until last week.  It was a week like any other; there were chores to do, things to buy and places to visit.  Then it happened.  Right out of the blue there was a niggle in my jaw.  I thought about the pain in my gum.  I had been gargling with mouth wash.  It helped a couple of months before with no further pain.  It didn't help today.  I have an appointment with the dentist next week.
The following day my gum and jaw held their own meeting consenting together to form a large painful lump where they shared common ground.  Out came the painkillers.  I fossicked for something stronger than Panadol but the thought of nodding off to sleep during the day kept me on the soft stuff.

My GP, as expected was booked and I grudgingly settled for the UK lady doctor with the loud voice.  She knew what she was talking about and handed me a prescription for extra strong penicillin.  She shouted instructions on pain killers but my brain was already disengaged and I strode off to the pharmacy to get those merciless goodie pills into me.  It had only been 24 hours but I could still remember the joy of good health and no pain. 

The packet told me to take medication with food.  I ransacked the fridge and ate everything I could throw on a plate.  Not everything made it to the plate.  I took my medication.  I took my painkillers.  I knew there was a long road ahead.  My swelling was still huge and throbbing but the pain killers worked quickly and I felt almost human. Goodness knows how I looked.

The very next day armed with the pain killers I headed off to the hospital to see a sick family member and visited Melanie afterwards.    My painful jaw was hanging around my knees and I held it up with my cupped hand.  It helped.

The sun set and rose again. I had visions of digging and planting in the garden, instead I sat in my chair holding my jaw and wondering if I would ever feel whole again.   We had a dinner invite that evening and I didn't want to decline.  I made a Jamie Oliver cheesecake full of wholesome cream cheese and double cream!  The crust was good the filling was runny.  I didn't care.  I stuck some strawberries on the top and it looked lovely.  Pity about the filling!  The dinner invite included the hostess, her husband and another couple.  We laughed, we chatted, we enjoyed.  Not once did I mention I was sick. 

The following day the weekend was on our doorstep and I all I could do was grab my pillows and make myself comfy on the sofa.  The TV entertained us while I drifted in and out of sleep.  Though I was tired, listless and sleepy I was still able to feed Merv and grunt any necessary information. He missed his shower that day but I made sure he had one the following day.   Sunday was pretty much identical to Saturday but my energy had began to resurface.

I'm now off the sofa but oh so very tired.  It just may be a week or two before the real me reappears!

 

The Last Leg of the Track

Today I had a whole list of things to do; they are still on my list.  I have done next to nothing.  After returning from yet another get-away on Tuesday I had vowed to have a, 'day off' and until today without success.  There has been Mel's GP appointment and shopping on Wednesday. Our 38th wedding anniversary to celebrate yesterday.  Today Merv has gone to his day centre.  They are off to lunch in the hills and I am finally having my day-off.  I sat and watched a favourite movie.  I laughed, I cried, I enjoyed.  I went down and bought potting mix from a local store and did the washing.  I had a glass of Margaret River wine with my lunch and enjoyed the warm breeze outside while I indulged.  I didn't do any exercise, housework, extra shopping or emailing.  I am having a break!
I can't remember the last day I had a lazy day.  I have been constantly on the run.

Cape to Cape post & wildflowers

Merv went into respite Monday 20th October and I was away on the Thursday for the last leg of the Cape to Cape track.  I completed stage 1 of the trek in April 2013 and the second leg of the trek in April 2014.  It is 135kms long. Stage 3 overs approx. 60kms.  My training: On Tuesday I walked up and down 300 steps and on Monday afternoon and Wednesday morning I walked 6kms on our fabulous Perth sandy soft beaches.  The group hike begins 24 October until Sunday 26 October.  The private bus picked us up from Perth Thursday afternoon and drove us to the quaint country town of Margaret River.  Our group of eleven met together for dinner before heading out early the next morning for Gracetown, from where we walked to the mouth of Margaret River.  It was an easy day.  The weather was warm and we were presented with an ongoing abundant display of wildflowers.  The colours and variety were amazing.  We spied a bob tail lizard lazing in the sun just off the path and a 1.5m brown snake (poisonous) slithering across open grass near the Ellensbrook historic house. The day was pleasant but we were hoping our driver would confirm we could cross over the mouth of the Margaret River.  If not, it was a long walk back and an added 3kms on top.  I spoke to the driver by mobile phone while we sat and ate our lunch, he did not sound concerned and was adamant we would be able to cross without concern.

First day easy walking

Our view from the cliff tops

Before 4pm we reached the mouth of  Margaret River only to find the river flowing strongly and nowhere was it safe to cross.  We said little but we all knew we would not be crossing on foot.  One of the walkers spoke to a man in a canoe who was paddling to our side of the river.  He was happy to ferry us all across, which is exactly what he did!  He refused payment stating he had 'borrowed' the canoe to ferry his wife across as the river. The current had suddenly became stronger and like us had been stranded. We were all very grateful to be across safely and dry! My feet were sore after today but finishing the walk was my only priority.  I bandaged my sore toes ready for day 2. 


Being ferried across in the canoe 



The following day threatened rain and as usual I had a disposable rain coat tucked in my backpack.  As we were headed out of the magnificent Karri forest laden with wildflowers of every colour and type (even the donkey orchid was photographed) the heavens opened up the rain poured down!  Out came the raincoats and one man plucked an umbrella from his backpack!  We laughed and nicknamed him, 'Mr Poppins!'  I have never seen a hiker with a brolley before!  The Karri forest led us onto the beach and a 6.5kms walk to Hamelin Bay where we stopped for lunch before another short walk along the beach and back into the sand dunes before reaching our pick-up destination.

2nd day Karri forest walking

Day 2 - beginning our 6.5km beach trek

Our last full day began where we had finished and soon we were on the beach ready to tackle the huge rocks and goat track which ran above the jagged rocks below.  We could see the Leeuwin lighthouse in the distance and the book pointed out our goal today is getting to the lighthouse!  At this time it appeared as a matchstick in size. Most of the goats track was easy to access while other places we had to grab a tree branch and pull ourselves over or under to stay firmly on the track.  the book pointed out it is important to be fit to complete this section of the track.  I was hoping! The goats track was finally completed but we were not out of the 'woods' yet!  A large area of high rocks stood between us and the beach ahead.  We scrambled over them without incident (but not without fear on my part!)  This led us off the 7kms stretch of beach and into the sand dunes and a grassed area to sit and eat our lunchbox style lunches. 

Kangaroo Paw (WA flower emblem) growing wild in the bush

Just a couple of the amazing wildflowers seen

So many rocks and cliffs!

Keeping the lighthouse in view all day

As we trudged through the vegetation which dwarfed us in size and kept the view of the lighthouse from us we continued to enjoy the amazing wildflowers.  Today we saw our first banksias and a tiny birds flitting around the high bushes.  Finally we were on a dirt road and the lighthouse loomed ahead of us.  We signed the Cape to Cape book and headed for the end of the track while continuing to scramble over rocks and beach sand.  The track finishes before the lighthouse, which I wasn't aware of at the time. Finally we were there and we celebrated with a glass of champagne, a certificate of completion and dinner tonight in Margaret River.  I am still overawed at my achievement.  I am so glad I did the final leg of the track. 

More photos and story can be seen on our fundraising Facebook page:
 https://www.facebook.com/walkforhuntingtons

Also on the Travel With Me Facebook page https://www.facebook.com/pages/Travel-with-Me/325519741110

Celebrating the finish of the Cape to Cape track (at last!)

The Big Cram

Queensland has the Big Pineapple, New South Wales has the Big Banana and I had the, 'Big Cram!'
Four holidays of sorts crammed into two weeks and one holiday yet to come.  Just like the song, it sounded like a good idea at the time!

It started off well with the holiday to Pemberton with Mel.  Back to Perth late afternoon and at the airport the next day with my friend heading to
Adelaide.  I caught up with my brother and his wife while just there for one night and my friend caught up with an Aunty of hers.  The next day we boarded the Ghan, for a two and a half day train journey from Adelaide to Darwin.  It is a direct route into the heart and outback of Australia.  The Ghan was named after the Afghans who took their camels into the desert outback so many years ago before trains and cars were used. 

Breakfast option with nuts and cooked Quandong

Our journey was unlike any other holiday.  The train rattled and rolled while we sat in the lounge car drinking champagne and chatting to other passengers. We drank a lot of champagne! All our food and drinks were included in the cost of our train ticket.  At dinner time staff converted the lounge in our tiny cabin to a bed and pulled down the top bunk.  At breakfast the staff converted it back to a day lounge.  Each meal provided three choices, many of them with a flavour of the bush.  Kangaroo fillet, Quandong, wild mushroom, damper.  We spent most of our time on the tracks in the lounge car chatting and playing board games.  The landscape continued to change throughout the day.  Most of the time the vegetation was sparse and the river beds dry.  It is the end of the dry season in the north of Australia and the wet season is soon to come.  The train slowed as we crossed from South Australia to the Northern Territory.  Everyone crammed the window space snapping away with their cameras and smart phones. 

Beautiful Katherine Gorge

The Ghan stopped at both Alice Springs and later at Katherine.  A tour of each place was included in our ticket.  It was my first time at both places and I rejoiced in the opportunity to stop and explore.  It was 40 degrees in Alice Springs.  The heat was dry while in Katherine the humidity was high. I did the town tour in Alice and the Gorge tour in Katherine.  We were fortunate to see original rock art by local Aborigines.  The water levels were low and we walked from Gorge 1 to Gorge 2 before stepping onto the next boat and enjoying the coloured high walls of the gorges and marvel at the bird life.

All too soon our train journey was over as we came to a slow halt just outside Darwin.  It was an experience.  There was little space to stretch but for a couple of days I was happy to stretch my fingers instead of my arms!  It was a good way to do little and relax and let others run around after us.  The fun has just begun our Kakadu adventure is just around the corner! 

The 2 Ghan Engines, cars and many many carriages!

Holiday in Paradise

No matter how I look at it, it still spells, 'guilt.'  It's just the way we are. We didn't know Huntington's Disease was in the family when we had our children. They were born with their genes; there is nothing we can now change.
I had two weeks; a holiday for Mel and a holiday for me.  I want to make her life right but all I can offer her is; love, support and a three day holiday in a country town.



Mel at the Gloucester Tree

We planned our escape months in advance. Mel wanted to see the prolific wildflowers in the spring and we chose the little timber town of Pemberton, deep in Karri country, south west of Perth. We hear there are also Jarrah and Marri trees growing. They grow according to the soil type but it is mainly the giant lean Karri trees which surround us with awe.  Wildflowers poke up on the side of tracks and dazzle us in clumps of vivid colours throughout the bush.

 We use our free pensioner travel passes for our coach transport. It takes just about all day to reach the town and we are weary from sitting.  I need to walk and I inspire Mel to take a walk to the well-known Gloucester Tree, not so far from our accommodation. It is 4pm already,  we are staying in a renovated old picture theatre of the 1920's.  It is now a selection of self-contained apartments. We have the 'Lounge' suite.  It is weird to think people of yesterday once sat here watching flicks pre and post war.  There are old theatre chairs and photos of old movies to enhance the feel if he place.

Mel and I set off for the Gloucester Tree. I set my Map My Walk app a little after we begin and soon realise the tree is further than we had thought. We soldier on, it has now become an adventure. We reach the Bibbluman Track and enter into a, ‘Little Red Riding Hood’ fairy tale, we watch out for the wicked wolf! The trees tower on each side of us and a sprinkling of purple and orange wildflowers delight us. We inhale the dampness of the forest and I worry about the slight wheeze I can hear from Mel's chest. We laugh at the sign which says 1.5kms and imagine it is wrong. I don't tell Mel otherwise! 

Finally the tack ends in the car park of the Gloucester Tree. A mother is taking photos of her daughter climbing the tree to the lookout high in the branches.  Mel is happy to return the same way we came and we have completed just under 7kms. 

The next day the sun is bright and our expectations high. We spend most of the day in a 4WD on a wildflower tour.  We roar up huge white sand dunes, drive without a care along isolated beaches of the southern ocean and stop frequently to walk and delight in our native wildflowers. 

We marvel at the donkey orchids and much sought after flowers. Our group is mostly older but our day is very enjoyable.

On our final day we join eight others on the Donnelly River cruise. The young man drives an almost all glass boat. Fortunately the windows open enhancing the view and dissipating the building heat. A large bushfire went through the area about three years ago and many dead trees still line the river banks. Tour guide, Sean eagerly pointed out the new growth from regeneration.  The boat took us all the way to the southern ocean.  Only a large sandbank separated us from the roaring ocean.  We stopped at the sandbank for Sean's homemade apple and cinnamon muffins before heading back to the boat ramp.  Another delightful day in paradise.  We treated ourselves to healthy salad rolls for a late lunch at the old fashioned bakery and later country Indian for dinner.

Today we are back on the bus headed for home. Mel and I shared a magic time together.

Native Wildflowers

 

 

Mel on Display

It doesn't matter Mel is almost 35, she will always be my baby.  A few months back she finished her colourful painting of the Muppets.  I had seen it in its infancy.  A colourful background and figures without faces.  Weeks passed and Mel gave me little tidbits of her progress; how the faces were coming alive on canvas with her love of vivid colours.
Finally it was finished and I was there to see her achievement.  I took out my iPhone and snapped a couple of pics.  Proud mummy I was!
Mel began another masterpiece  and she said in passing her Muppets were going to be displayed at the Midland Art Exhibition.  She had a couple of art pieces at the exhibition last year.  No drama.
But the story didn't end there.  The exhibition went from Midland to Fremantle, almost the other end of the earth for us! 
The opening night with the speeches was a busy Friday night with the exhibition opening during the next two weeks but only on weekdays.  Easy I thought, until I realised Merv was in respite and I was away for the whole two weeks.  The opening night was our only option.
I was tired, I was rattled.  I didn't want to go.  I just wanted to be selfish and mean!
I drank more coffee, I ran a little faster and off we went across town to the official opening.  As I battled with the peak hour traffic my brain suddenly sprung into gear and I started singing along with the radio.  I was transformed.  I was amazed!
We drove to Dustin's house who drove us the extra leg to Fremantle.  Merv is using his wheelchair more often now especially when a lot of standing is required, such as this event.
A hundred people or more were already busy admiring the art and helping themselves to wine and canapés as we arrived.
The art exhibition was opened by the Minister of Health and other dignitaries.  I haven't mentioned that the exhibition is for artists with a mental health issue.  The reason is simple.  As the presenter said, 'an artist is an artist, nothing more, the mental health of the artist doesn't make the artist any more of less an artist.'
I agree.
Mel was thrilled her painting of the Muppets stood out, close to the podium for the guest speakers.  I took photos, I drank wine and helped myself to sushi.  
I am so glad I made the effort.

Our Huntington's Family

We parked the car and walked a short distance.  The yachts sat idly together on the Swan River on a perfect Spring day.  We weren't spending the time walking or enjoying the view.  We had serious work to do and we were armed and ready to go.
Last week Mel, big sister and myself attended the two day National Huntington's Disease Conference in Perth.  Mel was the perfect conference audience, she sat and listened and took in what she could.  She never complained.  I had imagined she would be snoring on my shoulder whimpering about going home to watch her favourite 4pm TV program, but instead she was brilliant.
I love a well organised event.  Everything ran smoothly and the variety of topics kept our grey matter buzzing.
The neurologists spoke professionally and ensured us we didn't fall asleep by keeping their presentations to a level we could all understand.  There were presentations by people with HD and those who care for them.  It was challenging, inspiring and encouraging.  I am glad I went. 
The information which was new to me proved to be thought provoking. 
The HD community in Perth is like one large connected family.  On the first day I walked through the entrance door where a group of people were chatting.  Within the group I greeted and hugged;  HD staff members, researchers, carers, people and people with HD.  I have met these wonderful people in different places at different times but here they were chatting and catching up together in the foyer.
We all together supporting each other through the good times, the bad times and those so very sad times.

Harbouring Wild Animals

Life has been a roller-coaster of late, but life is like that.  Smooth sailing for weeks and then the wind changes and I am hanging on for dear life against gale force winds and thrashing waves which send me flailing helplessly, seemingly without help.

Then comes the excuses why things aren't quite how they should be! 
I have been too busy (relative or friend gasping at the height of the wild grass in my back garden!)
I have no time anymore (explanation for lack of blog entries)
I will do it tomorrow (I no longer remember what I had planned)

It's happened before and I am sure it will happen again.  It's time to just do a little at a time. 
After I showered and dressed Merv late this afternoon I took a pair of hedge clippers and took to the long grass.  I have to weave through the wild oats just to get to the washing line, but not anymore. I chomped and trimmed and pulled obnoxious weeds from their footings.  After only thirty minutes I could see the game was over.  No longer will my garden harbour the idea of wild animals.  Though much of the garden remains untouched I am inspired by the little I have done today and the promise of much more tomorrow and each day thereafter!
Just a little gardening, just a little blogging and my mojo is alive once again!

What is lurking in my wild grass?

Merv turns 60

There was much preparation before the big day, but it lasted so much longer than a day!  Merv finally turned 60 on Thursday.  I had been planning it for awhile with crazy, zany ideas coming to mind with most of them quickly swept away.  This is what we ended up with:  on Wednesday Merv went to his HD social group and was treated to cake and cheers.  I left them to fend for themselves, my energy was only in preparation.
Sneakily I had contacted friends and arranged a surprise morning tea at Cape Lavender in the Swan Valley for Merv on Thursday.  For his birthday celebration I had promised him a mystery tour of the Swan Valley and he expected morning tea only for the three of us (Mel included).  "Fancy meeting you here,"  I shrieked as we parked and a crowd of guests gravitated towards us!  We were soon seated at a long table.  I laughed to myself as the lady Pastor of Merv's church sat at the end surrounded by eleven others.  Only one guest isn't a Christian!  We delighted in lavender scones while Merv and a few others stuck to the regular type.  I ordered one serve of lavender ice cream and pulled out a packet of plastic spoons for everyone to indulge in a taste-test. We joked, chatted and ate but just after an hour the crowd began to disperse, getting on with their day's errands and appointments.  I was really chuffed to know they choose to spend time with Merv on his special day.  We spent the rest of the day visiting chocolate shops, the Mash (boutique brewery) for Merv's favourite beer with fish and chips, pub style.  We visited All Saints church, the oldest church in WA.  It was built in 1840.  There are services still held there most Sundays, it seats about 50 people.  We drove to Bell's Rapids and enjoyed the view; a break from eating and drinking!   We finished our day at the Honey Farm.  The next day Merv had a chocolate birthday cake at his day centre group.  I took the cake up before their expected morning tea time.   I kept busy chatting and helping with cups, teapots and savouries.  I took photos of Merv blowing out his candles and cut the cake into thin slices, allowing everyone to enjoy a little cake.  Merv finished off his celebrations on Saturday with a family lunch at Zizzi's Italian Restaurant.  They opened their restaurant just for us; I was impressed.  Once again there was twelve of us, but no pastor present and only a few Christians!  We enjoyed having the run of the place.  It was nice not having to compete with a crowd to be heard.  We joked, chatted, caught up on news, took lots of photos and enjoyed Merv's special birthday.  I gave out lolly bags (now they're known as 'loot bags').  No loot in mine, just lollies, a whistle and a birthday joke.  Today we are having a well deserved rest!

Family Photo at Zizzi's

One Busy Fortnight

It has been a big fortnight, bigger than most. 
Dustin and Grace have announced their engagement and they have already celebrated with a small group of close relatives and members of the upcoming wedding party.  I suppose I had expected it but with there has  been so many other issues creating havoc in our lives to consider and sort out.

At the Engagement Lunch

Merv had a fall in the kitchen yesterday.  Fortunately he did not hurt himself.  This comes on top of the ongoing swallowing problems.  The BBC (Provale Cup) is cumbersome and difficult to transport especially when going out for lunch etc.  Our speech pathologist came up with 'Safe Straws' from the US which provide a regulated amount of fluid which prevents choking.  I found a local distributor in Willeton WA, therefore saving on extra costs.  In theory the safe straw sounds like a sure bet, but in reality a whole range of problems surface. The straw attached to the plastic part which delivers the regulated fluid does not allow fluids with additives (chocolate milk, tea, beer etc) to move smoothly up the straw when sucked.  I came up with the idea of using the tubing in Merv's sipper bottle (the sports type).  The tubing is wider and solved this problem, except it is not flexible.   The speechie suggested aquarium tubing which is flexible.  This sounds fantastic until I visited the pet shop only to find the tubing was not wide enough!  I am now on a mission to source a wider tubing and have a range of stores which might deliver.  The journey begins tomorrow.  In the mean time I am also arranging Merv's 60th birthday next week.  More on the various celebrations to come. Over four days there will be four cakes and four celebrations.   Hopefully next week wont be quite so busy.  Oh! the garden needs weeding, the windows need washing, the list goes on.....

Merv using the Safe Straw

Harry and the BBC

This is not a media report (thank goodness!)  In my house BBC is an acronym for, 'Boring Brown Cup.'  Huntington's Harry has been throwing his weight around once more.
Less than a month ago Merv was enjoying his morning cup of tea after breakfast.  I was in the bathroom when the heard the gasping sound of choking.  I flew down to where he was sitting.  He had brought up some of the tea but he could not get his breath.  He began to panic.  I was talking to him while providing first aid for choking.  In desperation he lifted himself up from the chair which allowed him to clear his airway and he sat exhausted back in his chair.  Merv had choked on numerous occasions over the last four years but I had not witnessed anything like this. 

I am not a speech pathologist (who is trained in eating and drinking issues) but I refused Merv further drinks unless he used a straw.  I contacted the speech pathologist and she visited the next day with her stethoscope to listen to Merv's swallowing.  She concluded Merv must continue to use a straw in both hot and cold drinks.  This wasn't so difficult.  When we had lunch out I put a straw in  his beer glass and he did not complain.  I straddled a straw in his small cup of tea, which looked rather strange but he did not complain.

Last week Merv was drinking water through a straw when he drank too much and once again choked.  If the last time was a ten out of ten, this was at least an eight.  I emailed the speech pathologist.  She insisted she visit straight away.  I rearranged the day to allow her visit.



We hadn't expected her to bring the BBC, but she presented it to us and explained it allows only 10ml of liquid to be released each time the cup is tilted to drink from.  It is called a, 'Provale Cup.' It has taken Merv almost a week to get used to it.  Due to the limited flow, Merv now has to drink more frequently to ensure he is well hydrated.

It is only a cup, a lot like a takeaway coffee mug with a handle.  I imagined Merv's beer in the BBC.  I imagined going out for lunch and having to pour his drink into this now alien cup.  I couldn't think about it.  I got on with pulling the three parts of the cup apart, filling it with water and replacing it later with Milo or tea. 

The speech pathologist isn't 100% sure the BBC is right for Merv.  To buy the cup it costs $160 from the disability shop and just over $60 each online.  I am sure it costs $5 to make in China!  Until we get the thumbs up we will continue to use the borrowed BBC, emptying and refilling it constantly.


BBC Provale Cup