3 Too Many

The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience – Eleanor Roosevelt

Saturday sport!  How nice it was to be out in the crisp fresh Canterbury morning at footy!  Sarah (Tony’s sister), Majenta and Jayden came and sat with Tony while Damian took Jacob in one direction, and I took Lachlan in the other.  Thanks Damian!

Home and organise lunch, then I got Tony organised for an outing!  We were off to watch Pinkies play Nomads at Halswell.  Fresh air, sunshine and great friends – what a fantastic combination.  Craig arrives home from 12 days in Melbourne armed with a bottle of Bourbon for Tony, thank you!  I open the bottle and pop it under his nose for a sniff, I could just about hear Tony purrr!  I suggested that he had a wee taste …. needless to say, the bottle was past around the guys for a wee taste and they all agreed that it would be best served neat!  Final whistle finally blew, and a post game beer was enjoyed on the side line.  Shortly a discussion is had re carrying Tony upstairs to The Nest in his chair ….. great job guys :-)!  He is wheeled to the end of a long table which fills with his fantastic team mates.  Nutty and I disappear to the other end of the room and leave the boys to it.  Tony (aka Pinky) got player of the day, quite impressive being as his wheels didn’t go onto the field until after the final whistle.

Brian drops Jacob and his mate Tom down to The Nest.  I eventually decide that I should get Tony home before he tires too much.  Thank you for the many hands that carried him down the stairs, and helped get Tony into the car.  Then for Damian and Nutty for following us home to help me get him into the house.  Rochelle turns up with yummy onion barges, Amy has dropped off Nachos for tea also – so we all over eat!  Thank you for the yummy meal.

Later in the evening Tony fails to navigate the slight turn from his wheel chair to his bed (his right leg gives way at random), so the hoist is called into action and we successfully swing Tony back onto his bed!  This is of course followed by Jacob and Lachlan having a turn at flying.

Thank you Pinkies for a great afternoon together – you really are an amazing team and your support for our family is very humbling.

We have all had a great day with fantastic memories, shared with very special people.  Hope you have all enjoyed your Saturday as much as we have.  Have a gorgeous Sunday.

Sue and Tony

A beautiful person has a beautiful life – Junghwa (NM)

Well another working week is just about complete, one more week of school and then term 1 is finished.

Tony is continuing to amaze us all with his courage and determination.  He’s a real fighter!!

In general he has been alert and chatty this week

He is determined to go for a walk, to the point that he has been dreaming about walking up to BP to get some milk and a pie!  I have to remind him each morning that his left leg doesn’t move or weight bear, and his right leg is weak and gives way suddenly.  Nor can he eat a pie as mid week he chocked on a piece of pasty.  He has had quiet high head pain in the last 24 hours, and today looks as if it will be a sleepy day.  This morning we had a hoist delivered so that I can ‘move’ him more easily (receive lessons on how to fly Tony this afternoon!).  We are also getting a sliding board so he can transfer from the car to his chair and back again, more easily.  Enable have also delivered us a sturdy wheelchair – in theory we are good to go!!

Last night we had 10 of us here for a family dinner.  Tony got up and joined us at the table in his wheelchair, was fantastic to have everyone here and the laughter and chatter was gorgeous.

Tomorrow morning at some early hour, Craig Kelley Ashleigh and Charleigh head back to Canberra.  Thank you so much for coming over to visit us and for all you help and support.  Has been a special week we have shared.

Hope your week has been a good one.

Take care
Sue

Do what you feel in your heart to be right, for you’ll be criticized anyway – damned if you do, damned if you don’t

Well thought that it was time for an update!  On Thursday Ant continued to be in a very deep sleep, with a very rattly chest.  Ant was sometimes responsive to voice with a thumbs up or a squeeze of a hand.  Friday continued in same and after discussions with his parents we made the decision to ask the Priest to come and give Ant his last rights.  This was done late afternoon and Ant was peaceful while Fr Burns was here.  However, about an later, Ant sat up and asked for a flat lemonade, and eventually food!  Maybe it was seeing Tex and Rowdy that woke him?! Ant has continued to be a little more alert each day, however he is slightly less mobile and has less facial expressions.  Is still cheeky

Joh went home today

Craig, Kelley, Ashleigh and Charleigh arrived!!!

Boys had a sleep over at Kylie and Marks – thanks, they have had a great time with your family

Thank you to all who have visited, rung, text, emailed, fb messaged … supported us all.  Our thanks and love to you all.  This continues to be an emotional journey for us all – sooooo pleased that Ant has rallied again!!!  Every day is treasure.

Kia Kaha

Well we have shared a lovely low key family Easter weekend that seemed to last forever!  Surrounded by family and friends.  We have laughed, talked, told stories, shed tears and hugs.  Thank you so much to Matt and to the Fifita family who traveled from Queenstown and Nelson to visit – great to see you all.

Over the last week Tony has had more regular absent seizures (napping), and at times he has been battling high pain levels.  Today (Wednesday) he woke with bad head pain, which we spent the morning trying to manage.  Nurse Maude arrived and offered their unwavering support and advise, surprise visit from Nutty at just the right time (thank you!).  Tony’s pain is very similar to what happened two weeks ago when he was in the hospice … so now we wait, as he rests very peacefully (snoring).

Thank you to all who have, and continue to, help support our family, delivered meals / baking, and helped with Tony’s care since he returned home.

Take care
Sue

“Sometimes crying or laughing are the only options left, and laughing feels better right now.”  –Veronica Roth

1 year ago today we received Ants diagnoses from Christchurch hospital.  He is fighting this battle with such strength and I am so proud of the courage and strength he has shown us all.  

Friday – We had various family visit us today (great to see you Auntie Lynne!), and friends (sorry Fish and Damian that we were both napping when you visited, thanks Aubrey for supervising Ants sleep!).  Was a hot day and even hotter in the lounge, Ant spent a lot of the day napping.  We had Ro, Andy, Janelle, Aubrey, Sarah and Majenta for a bbq dinner – thanks Ro and Andy for cooking a great feed!

Today we had NM here as normal in the morning, and then the boys and I popped Ant in his wheel chair, wheeled him to the car and manoeuvred Ant into the car.  We then whizzed down to Barrington for lunch, nice to be out as a family.  Jacob pushes Ant around the mall and helps him with his lunch.  We are both so proud of our boys and how they are coping with our daily challenges.  We then head out to see Aubrey and Veronica (though we would check up on the house painting ), have a catch in their sunny back yead before  heading back home.  Thought while Ant was in his chair we would take the dog for a quick walk.  Joh pops in, and so do the Matthews family (nice to see you Uncle Col).

A quiet evening is planned in our home tonight.

Hope you are all having a great Easter weekend.

Take care
Ant and Sue

Wednesday we had our usual visits from NM, now daily, and always smiling, caring and helpful.  We also asked what happened last week when Ant went to sleep for two days, and the NM Doctor has said that they think he has more than likely had a small brain bleed.

Ant and I also managed a quick outing to Riccarton Mall for some small jobs before.

Ant has a hospital bed in set up in the lounge, tv at his feet … remote in hand and kitchen in full view … male paradise!  Ant still is cracking terrible jokes and keeping us all entertained.

Take care
Sue

“Obstacles can be a step stone or fall stone; it depends on how you look at it” – New Hot Guy (ZM)

Ant had a good restful sleep last night.  Woke to the normal Monday of getting Lachlan out the door to school (Jacob had a sleep over at Brads last night and the boys are off on camp today for three days).  Lachlan heads out the door for school, Nutty arrives, Joh arrives (nice to have you here!) NM x 4 people come then go, then we duck out for a quick walk in the sun before we have another NM appointment.  Ants head pain has been fairly constant today, thankfully we are managing to manage it so that he remains comfortable.

Mid afternoon Nigel, Steve and Bernard come over for a catch up with Ant – great to see you guys, looking forward to seeing you (and others from the office) again soon.  Thank you for the box of goodies!

Steve from Enable delivers a hospital bed table which is great! (will try to sneak a picture of Ant to share!).  A quite evening is planned

Hope you have all had a great Monday.

Take care
Sue

The last few days have been an emotional roller coaster and a blur for us all (especially for Ant) …..

Tuesday Ant was admitted to the hospice and settled in well , Wednesday he decided that he would have a very long sleep (this was due to the tumors and tumor head pain).  This ‘sleep’ lasted 2 days and had us all (hospice staff included) very concerned.  For those that know Ant and his constant jiggling and constant use of electronic devices, he was not moving or making any noises, a little unnerving.  Thursday morning Sue decided, and organised with NM staff for Ant to come home on Friday.  Ant and Sue had agreed prior to Ant going to the hospice that, no mater what, this was a return ticket – not one way.

Much to every ones relief, Ant did eventually wake up on Friday morning, was quite groggy and not as switched on as he usually is.  He is awake and chatting – wahoo!  Late Friday afternoon Ant arrives home (fantastic), and Aubrey and Graham help the St Johns girls get him onto his hospital bed at home.  discussions were had re the possibility of purchasing an ambulance so that we can do road trips while Ant is strapped to his bed

The family home has been a buzz with NM staff, family and friends this weekend, kids running about and playing card games and basketball, adults chatting – its has been a busy and great weekend.

Ant is very comfortable at home and is bright and bubbly, despite being bed bound (mobility equipment should be arriving mid week!).  The reality is that Ants world has changed again dramatically in the last few weeks and he can not be left alone for his own safety. The seizures he has, pain he experiences and lack of any balance are making him high risk.  Ant is now considered precious cargo and has security detail attached to keep him safe.

Thanks to all who have visited this weekend – been great to see you, pop by again soon!

Time to sign off and here is the quote for the day

‘Live The Life You Love’

Ta ta for now everyone
Joh (little big sis) & Sue (non mofo half)

Hi all

Thought that you would all want an update on our world …

NM here on Monday arvo (following up from Ants bad day on Friday), and decision was made for him to go into NM Hospice for assessment and respite care.  His mother and I took him to the hospice Tuesday morning.  Was an emotional day letting go of my special man into someone else’s care for a few days.  Will be good to have him assessed properly so that we can get the equipment and help at home that we need now for day to day life.

Thanks for all the phone calls, emails and texts of support that we have been receiving.

Take care
Sue

A slow start to the morning , then get organised for Aubrey to pick up Ant as the team have a friendly at Halswell this arvo.  Aubrey arrives, Lachlan decides to go and be support crew for the outing.  I give Aubrey his ‘instructions’ for ‘just in case’ … and off they go all grins and smiles!

Lachlan is hunter gatherer and gets Ant his lunch from the Halswell bakery (and feeds himself as well!).  I believe that there were many offers of help to push Ant to the sideline in his chair – thanks guys! (I hear the front wheel dug in and he just about fell out, ops!) It was a great game of footy between 45s and Over, & 45s and Under – pleased to report that 45s and Under won (aka Pinkys).  Well done chaps!  Then up to the club rooms for a drink.  Ant managed to get himself up the stairs under his own steam, with a support crew surrounding him!

Ant, Aubrey and Lachlan arrive home.  Lachlan takes off to Rochelles (Jacob is there doing baking with Janelle).  Ant, Aubrey, Rochelle and I sit round the table and have a great catch up.  Ant is looking shattered and nodding at the table, so I take him to his chair in the lounge, tilt him back and to sleep he goes.  He has had a fantastic day at footy with the lads, and the fresh air and change of scene has been fantastic.  Aubrey takes off home, Rochelle heads off, kids arrive home with fresh baking – thanks Janelle – in time for dinner.

Ant has had a great day with the Halswell footy boys …… thank you to you all.  He is still sound asleep.  I hope that your St Patrick’s day has been as enjoyable as his has been.

Kia Kaha

(…. he may add to this later!)