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Summer 2014/2015

There have been significant milestones in Rory’s life over the past 5½ months.  We have met them with energy and emotion, and I have recorded them in my daily diary.  Somehow they have not made it off the page and onto Rory’s website.  I have been determined to catch up, to continue the story of Rory and our family so the boys will remember, and to share the journey Rory is on with our wonderful support network.

The absolute highlight was Rory making it to his teenage years when he turned 13 at the end of March.  In true Rory form he started the day at 5.45am.  He opened his presents and cards at the kitchen table after we sang Happy Birthday and he blew out a candle in a hot cross bun.  Phone calls followed, and his Tech class and his usual class sang him Happy Birthday at school.  We took his friends Alex, Josh and Luke to Delux Diner in New Plymouth for dinner.  The huge American meals got the better of all of us, and we couldn’t even manage the cake I had baked.  The boys slept over in the lounge enjoying fun and games, movies and x-box.  It was wonderful for Rory to have friends to share his special day with.

Ten days before Rory’s birthday he reached six years survival after diagnosis with brain cancer on 17 March 2009.  We always note this date but let it slip quietly by, conscious it marks both the day cancer came into his life, and the amount of time he has been able to live since.  Even though Rory went into remission in January 2010 we have had to live with the after effects of the disease and its treatment.  We were given a shocking reminder of the fragility of Rory’s life in February.  After tramping for the day to Te Rerepahupahu Falls Rory experienced an ‘episode’ at the camp site.  The only person with him was Sam.  Sean and Colt were collecting water and I was taking photos.  Rory began to slur his speech, and one side of his mouth and eye drooped.  He was having difficulty controlling his mouth.  Sam thought Rory was having him on at first, then realised it was something more serious and started yelling for Sean and I.  We thought Sam was calling out for something insignificant, and didn’t realise it was serious until we registered the increasing anxiety in his voice.  When we got to Rory we were frightened, we didn’t know what was happening, or what we should do.  We sat Rory down, reassured him, kept him quiet and assessed the situation.  After about ten minutes the majority of the symptoms subsided.  We were 6 hours walk from a road end in the heart of Waitaanga Forest and it was getting dark.  We had a personal locator beacon with us, and we discussed setting it off for emergency evacuation.  We decided against it as the episode appeared to be over and Rory seemed ok.  He ate dinner and then slept solidly for ten hours.  Sean and I checked him for two hours after he went to sleep, half expecting to find him not breathing.  When Rory woke on the Sunday he seemed to be alright so we tramped back out to the van.  We phoned the Children’s Ward at New Plymouth Base Hospital and they told us to bring him in straight away.  I took him to A&E and he was admitted for observation overnight on the ward.  It wasn’t lights out until 11.30pm and Rory and I were shattered.  On Monday Rory had blood tests, an MRI, and an MRA (blood vessels).  There was no change from previous tests.  The Doctors suspected a mini-stroke or a seizure and he was referred to Palmerston North Hospital for an EEG.  This was done a couple of weeks later.  Electrodes were stuck all over his head to measure his brain activity.  We met with the visiting Neurologist.  The EEG was normal.  We are still in the dark about what happened, and whether there will be further or bigger episodes.  We have been instructed to keep a close eye on Rory, and provide supervision during activities when there is a risk of serious harm if he was to have an episode i.e. riding his bike, swimming, taking a bath.  His school have been fantastic, arranging for one-on-one support for the first few days after the episode so someone could respond.  It was a very stressful time.

We manage the other late effects as best we can.  Rory sees an Endocrinologist twice per year.  He continues to take growth hormone (1.5mg) daily via an injector pen.  The drug was changed by the government (Genotropin to Omnitrope) which required training from Nurse Clair in the use of a new pen.  He continues to take a Thyroxine tablet every day for energy (100mg).  Blood tests showed his Cortisol level was low for the first time, which wasn’t unexpected.  Thankfully a Synacthen test showed his adrenal glands are currently working ok.  The injection of puberty blocker (Lucrine) is now given every three months, but unfortunately requires a stingy injection in each buttock.  Rory had his annual MRI in October followed by a clinic appointment with Oncologist Dr Stephen, thankfully to only discuss late effects.  Yay he remains in remission!  Jane at the Hospital fitted Rory with new Orthotics for his shoes to improve his stability and prevent lower limb sprains and strains.  They make a big difference.  Rory’s hearing has remained stable but there is evidence of neuropathy on the right (a problem with the nerve pathway between the ear and the brain).  Following his last bout of hearing loss Rory can now hear better with his poor left ear than his right.  We have been working closely with the Audiologist at the Hospital and Mark from the Ministry of Education to ensure Rory has the right assistive hearing device in the class room.  In 2014 his teacher wore a transmitter around her neck which was connected with a speaker at the back of the classroom.  Her voice was amplified for all the children.  In spite of this Rory was spending a lot of energy trying to hear over the background noise.  For the past month we have been trialling a transmitter which connects directly with Rory’s hearing aids.  When Mark used it for the first time Rory’s face lit up.  I wish I had a photo of his face.  The sound was loud and clear, straight to his ears, even when Mark was in another room!  I think the new device is going to make a significant difference for Rory.

Rory’s life is full of kid stuff.  He finished Year 7 in 2014.  I had a little cry at his parent-teacher interview at the end of the year when he read out his achievements.  I was very proud as I know it is a struggle for him and he tries so hard.  He was awarded the NZ Federation of Deaf Children Medal for excellent achievement at school.  At the end of the year he participated in the Taranaki Tough Kids Challenge at Yarrow Stadium with the support of Uncle Guy during the balancing components.  He enjoyed the IPS 100s Club bbq, and the Intermediate Big Day Out to the pool and the movies.  He finished his numeracy tuition with Clever Kids.  I worked with the Principle, his teacher, and the Special Needs Co-ordinator to ensure he was in the right class in 2015, and to discuss his situation.  This year Rory is a Year 8, and is in room 14 with Mrs Banks.  He has his best friend Alex in his class.  This term he brought home a certificate for Intermediate student of the week, and has been made a House Leader for Miro house.

Over the summer holidays Rory was lucky enough to attend Camp Quality for six days in Marton, with Stephen a new companion.  He had a fantastic time, and it was his last camp as he is now too old!  He has been swimming twice per week at the Inglewood Pool, completing a 1km swim during the final sessions.  This was absolutely amazing to see.  Rory (and Sam) spent a few days working with Nana Honnor in the New Plymouth Hospice shop, and Rory collected at Inglewood Shoprite with Sean for the Child Cancer Foundation (CCF) annual Appeal.  Rory worked with me to man the fruit and drink stall in Inglewood at the half way point of the Mountain to Surf Marathon, again for CCF.  We spent a morning at Ngamotu beach for a CCF Science activity.  The boys had fun making kinetic sand, volcanoes, elephant toothpaste, and being entertained by CJ the clown who made an example of Sam.  Sean and the boys have attended some Halberg/Parafed Sports Club events; Orienteering in Pukekura Park, Beach sports (IRB ride, swimming, paddle boarding), then Archery and Table Tennis at Icon Sports. Sean was very competitive during the Orienteering.  We were one of 7 teams and had an hour to collect as many markers as we could in the park using the map.  We were the only team to get the furthest away marker (at my unwise suggestion) and as a result collected less markers and came in 3rd place.  Sean was devastated.  We all needed reviving with Pizza and juice on the Hatchery Lawn afterwards.  We were visited one evening by Shirley Wilson from the Brain Injured Children of NZ Charitable Trust.  It was inspiring to hear stories about what other children are achieving, and I was comforted to hear about other mothers battling away like I am.  I was reminded of how much Rory has grown up when he went on his first date with girlfriend Emily to the movies, and later to her house for dinner with her family.  Unfortunately when school went back Emily broke up with Rory and he was very disappointed and sad.  At least he is getting the opportunity to experience the growing pains of life.

In December Sam turned 15.  He went to the movies, ate Hells Pizza, and had a sleepover with his best mates Taylor, Kieran and Izaak.  On the Sunday we drove north to Mohakatino Swamp.  We had a sponge cake with candles and sang Happy Birthday to Sam at the back of the van on the side of the road on SH 3.  The boys and I walked down the river to the coast, and along the beach.  We met Sean on the edge of the reserve as he had cut across to shoot feral goats.  We had a picnic lunch in the dunes returning to the van past the swamp.  The boys had a quick dip in the Onaero River on the way home, followed by hot chips.  Sam finished Year 10 at Inglewood High School with a camp to Auckland and the Coromandel for four days.  We were very proud of him at Junior prizegiving when he was awarded a Junior Diploma with Distinction, with Distinction in PE, Sports Performance, Te Reo and Social Studies, and Diligence in Science and Digital Tech.  This best friend Taylor also received this award.  Sam has returned to school in 2015 as a Year 11, and is working towards Level 1 NCEA in English, Maths, Science, Te Reo, PE and Digital Tech.  His interim school report says he is doing very well across all subjects but is excelling in Science, Te Reo and Maths.  He has been elected onto the School Council.  Sam started work on the Duke of Edinburgh Award last year, and the students had a great time on an overnight tramp on the mountain to Lake Dive Hut.  Sam is still on the Committee for Canteen Taranaki.  He attends their monthly meetings when he is able, and attended a Real Camp in Christchurch one weekend.  He bag packed for the Round the Mountain Relay, and the Round the Mountain Cycle.  Sean, Sam and Taylor cycled in the Canteen team which finished in six hours.  A couple of weeks ago Sam went Dam dropping with a group of Canteeners on the Waingongoro River.  The event was run by Taranaki Outdoor Adventures.  He got the opportunity to go over the weir front ways and backwards on boogy board and kayaks.  Co-ordinator Kat chickened out!  Over the summer Sam was lucky enough to spend 10 days camping at Ohope with good friends of ours the Ladbrooks.  He had a wonderful time with Jordan, and his friends Izaak and Kieran who also went along.  He talks often about what they got up to.  Sports remain Sam’s ‘thing’.  He was 2nd in the 50m backstroke, and 2nd in 25m freestyle, at the school swimming sports.  He has been doing some running and got 1st in 1.5km and the whanau relay, and 3rd in 800m at the school athletics.  He spent three days doing activities at PE Camp in Urenui, and has started practicing for the coming football season, joining three teams; Inglewood AFC U18, Premier Reserves, and the IHS team.  His best friends Taylor and Kieran turned 16 last month, and real relationships with girls are beginning.  Something I am not sure I am ready for.  Sam had a girlfriend, Shechinah, for about a month in the first term but it fizzled out.  At Christmas he attended Christmas in the Park at the Bowl of Brooklands with a bunch of friends and they were out till late worrying both Sean and I.

Our little man Colt turned 4.  We shared a family lunch, and in the afternoon he had his first birthday party with friends Neo, Jake, Zach, Emma, and Addi.  The children played continuously and there was a lot of laughter and excitement.  Party games weren’t needed.  The parents hung around and it was nice to get to know some of them a little better.  Everyone enjoyed cake and treats for afternoon tea.  Colt, as the youngest by almost a decade, is adored by all of us.  I think he loves us equally in return because when we left Grannie and Grandad Gardiner’s this week, leaving Sam and Rory with them, he had a little cry.  Colt is growing up with big brothers so is into big boy stuff; super heroes, dressing up as his favourite characters, reading, watching movies, playing games on the ipad and x-box, exploring the outdoors when we go tramping, listening to music (he often sings along), and active play.  He swims like a fish underwater with his goggles on, and loves Playball at crèche with Coach Mike.  He liked fixing the front fence with Poppa Honnor with the hammer and nails.  He was very brave when he received his 4 year old immunisations, which wasn’t surprising given the number of needles he has seen Rory jabbed with.  Colt has a little group of friends at crèche and enjoyed attending Jake and Addi’s birthday parties.  He is settled and happy at crèche and often waves me goodbye at the fence when I drive out.  He enjoys water play, building with the Mobilo, and the bike safety sessions put on by Sport Taranaki.  One day he found a katydid (kiki pounamu) in the garden.  He put it in a container and took it to crèche.  It was a big hit with the children and there was much discussion.  Colt showed them how to care for it.  Colt also enjoys the events crèche organise after hours like the Halloween and Christmas parties which we attended at the end of last year.  Colt and his best friend Neo have not been without their share of scrapes.  Neo got a spiral fracture in his leg from landing awkwardly at the bottom of a fireman’s pole at the playground, so was in a cast from ankle to thigh for six weeks over the summer.  Colt stuck a plastic BB pellet up his nostril and it became lodged.  It gave us a fright when it wouldn’t come out, and we thought it would require a trip to A&E.  Thankfully after 15 minutes of blowing and prying it came out on its own.

As a family we pack plenty in.  I’m not even sure how to begin to summarise almost half a year of happenings.

Our love of tramping and exploring the wild continues, even though Sam complains all we do is walk.  On Mount Taranaki we walked the Ram track and heard a Long-tailed cuckoo calling loudly very close but in spite of our best efforts we couldn’t spot it.  We enjoyed a picnic lunch in the sun outside the Camphouse.  We walked to the Waiaua Gorge Hut and took a detour to visit the Ventura Bomber crash site.  In 1944 five men lost their lives on a navigational flight from Ohakea after the plane crashed and caught fire.  There is still quite a lot of wreckage on the ground.  The boys had a quick chilly dip in the Manganui River when we walked the York Road Loop track.  The native Broom was flowering and the flowers were tiny, purple and white, and beautiful.  Sean, Colt and I spent 7 hours starting on the Mangorei track walking to the summit of Henry Peak.  There were five ladders to ascend the Peak.  Colt walked half the way, then Sean and I took turns carrying him.  We got very close to three Rifleman and a Fernbird, and there were heaps of flying insects.  We got above the forest on the return walk from the Stratford Plateau to Tahurangi Lodge.  We spent one Sunday with the Pukeiti Explorers Club undertaking a BioBlitz in one of the streams.  Using traps, sieves, magnifying glasses, and ID books we attempted to identify all animals living there.  We have been busy off the mountain.  We cycled the length of the New Plymouth Coastal walkway (26km return), and it was our first time on the northern extension.  Colt rode on the back of my bike.  We stopped for sushi for lunch at Bell Block beach.  We climbed the Hawera water tower.  Thirty seven of us went with the New Plymouth Tramping Club on their annual trip to Matapeka Falls.  We took Taylor and Alex.  The river was very low and we discovered some freshwater mussels.  We had lunch at the Falls, and the boys got under the waterfall.  Lots of people swam across the pool.  One of the little girls was bitten on her toe by an eel.  Sean managed to attract two eels and some koura with a road kill possum we had carried in.  It was a very hot and sunny day and all the water was consumed by the time we were half way out.  We revisited the Falls a couple of weeks later, guiding in Professor Clarkson and his scientist wife Bev to check on an unidentified plant I had photographed on our earlier trip.  It turned out to be something common but Bruce discovered a new population of an endangered giant cliff dwelling daisy which was very exciting.  Professor Clarkson is writing up our find for the journal of the NZ Botanical Society.  We took Sam’s friend Izaak in with us and the boys and Sean pulled three large long-finned eels up on to the bank with a road kill rabbit which we had carried in.  The eels were released afterwards.  Whitecliffs is one of our regular therapy walks and we made a trip from Pukearuhe to the stock tunnel via the trig.  Izaak came with us and the boys had a swim before the boat ramp.  We had an awesome couple of days in Waitaanga Forest (Rory’s episode aside).  The track follows an old tram line, and the wooden sleepers and iron nails are still in place.  There are many swing bridges to cross the streams.  We had a nosy in the DOC staff hut, and then carried on up the ridge to Te Rerepahupahu Falls.  We pitched our tents on the flat beside the Falls.  The waterfall was quite noisy and we took a dip in the pool and under the spray.  Overnight rats got into our rubbish scattering it everywhere.  We saw and heard many NI Robin, and a morepork moving silently through the trees in daylight.  We went for a goat hunt on a property at Mangamingi where Forest and Bird are undertaking a restoration project.  The boys and I enjoyed picking blackberries.  I gave a talk at the World Wetlands Day field event on the Russell property on Toro Road, Tarata.  We went for a walk on site to see the restoration, and stick insects were dripping from the manuka.  We were dripping wet from the rain by the time we got back to their hut.  We attended the Community Guided Snorkelling event for Sea Week at Ngamotu Beach.  Emily from TRC took Sean and the boys out and they got to see sea cucumber, mullet, kina, kelp and starfish up close.

We have also enjoyed people time.  We enjoyed a picnic lunch with the girls and their families at Audrey Gale Reserve, and a takeaway dinner on Ngamotu Beach.  We have had many family lunches with Nana and Poppa Honnor, Uncle Guy and cousins Sacha and Corbyn.  We spent two hours at East End beach one Saturday afternoon swimming, playing in the sand and boogy boarding with Uncle Guy and the kids.  Sam got a surfing listen from Rob at Parafed.  We went to the Taranaki Vintage Machinery Club Open Day on the Honnor family farm at Huirangi.  I met Viv Honnor, her husband Colin is a distant relative (my Great grandfather and his Grandfather were cousins).  I met Viv and Colin’s grandson Kieran, and I was surprised to see and he and Sam share many similar features.  The boys liked trying the various old fashioned bikes, and shucking the corn by hand.  We took the boys to the Inglewood Christmas parade.  Colts teachers were on the crèche float and they called out to him but he was too shy to wave.

We have been very involved with the Taranaki branch of the Child Cancer Foundation.  I joined the Committee and attend the monthly meetings.  Rory and I did the shopping for Santa for the Christmas party.  It was a fun day with a big dig, a teddy bear hunt, a bouncy castle, zorb water walkers, Mr Whippy, the Detonator, and Santa.  We attended the Charity Auction organised by the Professionals for our local CCF branch.  Clayton Robinson who works with Sean at TRC generously donated a guided hunt with his company Ohinerata Hunting, and the East Taranaki Environmental Trust donated the experience of a lifetime, the chance to release a kiwi chick into the wild.  Thank you both very much.  Together they raised $1,180 and made the two bidders very happy.  Rory wore his Beads of Courage at the Auction and went up on stage with the other children.  He was a bit unprepared when he was asked to say a few words.  We all helped out at the Taranaki Truck Show, another fundraiser for our local branch organised by a group of local truckers.  I chaperoned the children as they got to ride in the 120 trucks in convoy across New Plymouth to East End reserve  When we got there we worked for a few hours at the CCF stall cooking on the bbq, and selling drinks and icecreams (thank you Nana for your help).  Shirley (one of the other Committee members) and I, and Nurses Jane and Carol, made a trip to Wellington to hear Dr Hamish Wallace (Scotland) talk about late effects of childhood cancer survivors.  There were 100+ parents and young adult survivors in the room and they all looked weary and traumatised by the journey they are on.  There were so many stories about parents looking for answers, and support so their children can have quality of life.  It was heartbreaking.  It made me feel like I am not alone

We have made two trips to Northland.  We had Christmas with Grannie and Grandad Gardiner (also his birthday), then stayed on for two weeks holiday.  We drove north to Te Utenga Bay with Grannie and spent the day at a bach with Sean’s Uncle and Aunt and their families.  The boys enjoyed spending time with their cousins.  We spent a day in the mid-north.  It began with a trip to the Kerikeri Farmers Market, then a visit to Rangihoua Heritage Park on Purerua Peninsula.  This is the site of the first pakeha settlement in New Zealand, and the first church service 200 years ago on Christmas Day which is marked by Marsden Cross.  It was an easy walk down to the beach and we enjoyed reading the new interpretation panels.  Unfortunately Colt had a fall (his third of the trip), and passed out during one of his breath holding spells.  It frightened us all.  On the way home we had soak in the rain in the Ngawha geothermal pools on the outskirts of Kaikohe.  The pools are run down and have a very strong sulphur smell.  Rory and Colt enjoyed smearing themselves with the grey and black mud.  Sam did a fair amount of protesting.  We smelt like rotten eggs for days afterwards and Grandad Gardiner was not happy.  One day we drove to Paihia and caught the ferry out to Urupukapuka Island.  We walked around Urupukapuka Bay and the Pateke Loop track.  The pohutukawa were flowing profusely and there were Tui everywhere.  We had a swim and snorkel in Paradise Bay and Otehei Bay.  There were many yachts and launches moored around the island.  We walked around Waro Limestone Scenic Reserve near Whakapara.  The natural limestone formations are impressive.  We walked the Tutukaka Headland track and crossed the causeway at low tide to climb to the summit of Kukutauwhao Island where the lighthouse is located.  Sean and Sam went snorkelling in the bay beside the causeway.  We found a new private track on Old Mill Lane at Ngunguru which begins with board walk over a wetland, then enters Hugh Crawford Reserve.  We had a chat to the landowners about their private restoration project and heard several fernbird which were nesting in the wetland.  We walked part of the Ruakaka Pipeline Road track, and cut down onto the beach for a swim.  We collected shells and Colt made a sand and shell cake.  We walked to Whale Bay at Matapouri and went for a swim and snorkel.  Rory, Colt and I built sand castles.  We drove out to Ohawini Bay and walked to Motukowhai where Grandad Gardiner grew up with his grandparents.  We looked for pipis and got caught in a downpour of rain.  We had morning tea with Trudi and Kody Johnston and family who were staying at Ohawini, and fish and chips on the beach at Oakura for lunch.  Sean and Sam went goat hunting with Grandad, while Rory and Grannie went to town.  I took Colt for a walk in AH Reed Kauri reserve, we played on the playground at the Town Basin, and had morning tea with my good friend Dianne and her husband Riccardo.  Sean, the boys and I walked the new Hatea Loop walkway at the Town Basin.  It has a lot of neat art and sculptures beside the path, a new footbridge over Waiarohia Stream, and Te Matau a Pohe Bridge over the harbour.  We spent a couple of hours at Maunu cemetery looking for the graves of Sean’s grandparents (William and Kapri Gardiner), and great grandfather Peter Strongman.

We spent the first week of the Easter school holidays up north, and Sam and Rory have stayed on for the second week.  We were spoiled with five hot sunny days, bountiful feijoas, and crayfish.  Rory and Colt never adjusted to daylight saving which made for very early starts.  We drove over to the west coast and walked around Lake Taharoa (Kai Iwi lakes).  The lake was very low and the water was warm so the boys had a dip.  There were a lot of visitors about, and the boys caught locusts as they walked along the track.  We made a quick stop to visit Tane Mahuta in Waipoua Forest, and walked out to Arai te Uru at the south head of Hokianga Harbour.  The cliff top has a very spiritual feel, and you get a view up and down the west coast.  We walked the track through coastal forest at Whangaruru North Head where Sean used to undertake predator and possum control to protect kiwi.  I picked up two bags of plastic rubbish at a secluded beach.  On the way back to the van we checked out the site for the new Camp Kiwi.  We always make a pilgrimage to Mimiwhangata Coastal Park.  On this visit we climbed to the trig at the end of the peninsula, and were rewarded with amazing views.  The descent required some bush bashing and rock scrambling.  While the boys had a swim at Mimi Bay I took some photos of a skink I had disturbed in Rory’s cap.  We made a visit to Whananaki North to walk the Coastal loop.  We always enjoy crossing the estuary on the longest footbridge in the southern hemisphere.  We were followed all the way by a chocolate Labrador who Colt decided to name Bear.  We walked the Hatea Loop Track at the Town Basin again, and only just stopped in time as the road bridge was raised to let a yacht through.  Colt enjoyed his first ‘Grannie day’, checking out the toy shops, choosing a special purchase, having morning tea in a cafe, and riding in her car.  We visited our good friends Denise Limby and Andrew Miller.  Andrew was diagnosed with cancer late last year and recently endured intense, invasive treatment.  It was wonderful to see them, and Andrew is fighting on, but it was also heart breaking.  In addition to taking small steps on the road to recovery Andrew, who is a Dr, is campaigning for the Human Papilloma virus (HPV) vaccine to be available for teenage boys in New Zealand.  It was the cause of his cancer, and is linked to mouth and throat cancers in men.  The vaccine is currently only available free to girls as protection against cervical cancer.  Andrew is doing a great thing for all our sons.  We received awesome news about Grannie Gardiner before we left.  Her CT scan and blood tests show she remains in remission for kidney cancer.

Some of the other wonderful people in our lives have celebrated their special day over the last six months; Happy 6th birthday cousin Mikayla and 15th Birthday Logan.  Happy Birthday Sean (you’re still a fine specimen in your 40s).  Happy Birthday Nana and Poppa.  Happy Birthday Uncle Guy (only 1 year off 40 now).  Happy Birthday Grandad.  Happy Birthday Tim (thanks for being such a great mate).  Happy 13th birthday Kody Johnston.  Happy 12th Birthday Alex.  We love you all heaps.

A couple of months ago Sean and I saw a threatened NI Rifleman in King Edward Park in the heart of Stratford.  If we hadn’t seen and heard it I wouldn’t have believed it.  We continue to believe everything is possible in all aspects of our lives.