We are a family of competitiveness and tonight we broke our family record!  (Well nearly)

Arriving home from a lunch out with friends the Family Soper topped “The Dispatch Tom from Van” in record speed of 11 minutes…

Ciara: eldest daughter, (normally child sitting shouting orders) holding her Dad so tightly so he doesnt rock side to side in the van he hates so much, says: “Ready!”

Erin: youngest daughter, (normally child holding father as above, so lovingly and oblivious to the road rules of wearing a seat belt), fast asleep in double seat of van…

Sally: Mother, wife, driver, of van/ET: screams up driveway at breakneck speed and haults 2 cms (no lie) before the garage door.

Ciara: vaults to the front of her Dad, (Erin still asleep), to unclasp the 2 front harnesses at the base of her Dad’s wheelchair. Hand up! Done!.

Sally: rushes round to the back, opens the tail gate, presses the control to deploy the lift.  Lift Deployed. Leans over, unclasps (with difficulty) the bottom two harnesses. Then releases the next two shoulder harnesses together with Ciara, at her Dad’s chest, (Erin still asleep on the front bench. Not to knock her! as this is normally her role!)

Tom, Dad: reverses onto the lift that has been deployed. The call, “30, 20, 15, 10, 5cm… stop)…..”  And then lower….

Our record was not broken because I couldn’t find the **** keys for the back door so we could get inside the house…….!!.

Watch this space……….

Team Soper

The girls and I headed to Kariba on a houseboat with some friends for a couple of days before Easter.  The day before we left Tom gave them a lesson on fishing – how to “tackle up”.  I sat outside with them, in silence, listening to how he described to Ciara the way to secure a sinker on the end of the fishing line and how to thread a hook.  I was so proud of them both as she mastered it pretty quickly from his instruction.  But then I got angry. Why do these girls have to be told how to thread a hook and not physically shown?  The frustration of both father and daughter when words just don’t say enough when the use of hands would have clinched it in seconds.

It’s a sick kind of cruel because it feels like a carrot being dangled……  there’s your Dad but you can’t have him.  He won’t be able to thread the worm on your fishing h00k or take the fish off that you’ve just hooked! And he wants to desperately.  That job is now mine.  And I don’t really want it.  On one of the days I spent a couple of hours doing exactly that, the girls were fishing off the houseboat so they were catching a little tiddler every few minutes.  The experience for them was awesome but I became so overwhelmed at being this “one abled parent”,   I had to walk away and really pull myself together.  Literally physically hold my head in my hands and say “this is for them, this is for them”.  Tom sent me a text and I received it just as we were leaving the harbour.  Sal, be the Dad for fishing and the Mum for loving.  I’m tired and lonely and angry and bitter.  But seeing the girls reel in those fish was all about them.  So I juggled the video camera to catch the moment for Tom, under my arm, with a spare hook in my mouth and a slimy worm in one hand and dislodged a small tiddler with my other, oh and a beer tightly squeezed between my legs!  Yes their first experience of a houseboat on Kariba was with their Mum and not their Dad.

I keep thinking of those kids who don’t even have a dad and I immediately feel guilty for even showing or mentioning my sadness or anger for my girls.  But this is OUR reality and no one else’s and this is how I feel.

The last time I was in Kariba on the same houseboat was with Tom.  And the picture of Tom on his website was taken then.  It haunted me. I saw him on the speed boat calmly holding a fishing rod and sipping a beer with his huge smile.  We had the best time ever with our framily the Malloch-Browns and Greenways, in fact I would say those few days bonded us all so tightly in laughter and framilyhood.  Forever. So where was he this time?

A while back Tom wrote about what inspired us.  Ciara and Erin are my inspiration. 2 children’s lives changed in a breath.  A traumatic accident leaves them without a Dad to hold their hand to the classroom, to practice a golf swing, to turn the page of their homework book, to pick them up and squeeze them so tight it takes their breath away, to dance, to swim, to wipe a tear, to take them for breakfast, go for ride, cuddle in bed.  But to remember how he did these things and know that can never again.

I question why they have had to watch and learn how to help their Dad cough, wipe his nose, his tears, empty his urine bag, lock the house, operate a chair lift, feed the dogs, scream for me because they hear their Dad making choking sounds, worry if Dad will be ok if we go away without him. Accept that Dad will never run cross country at school with them, never take them skiing, or cycle round the block. The inspiration comes in the form of innocence and acceptance by these two precious girls.

I suppose this is what our new life is now…. a question of scales and balances. Sometimes tipping heavily to the side of pure sadness, sometimes perfectly level when it just doesn’t matter, and sometimes crashing down on the other side from love and laughter.  Yip I think that’s what this is, a life of scales.

It’s 2 years since Tom lost the use of his body from his neck down.  2 years that I have cried every day. 2 years since Keeks and Roo physical life with their Dad was abruptly halted.  But it’s been 2 years of incredible hope.  2 years of extraordinary friendships. 2 years of sheer amazement.  2 years of acceptance. 2 years of learning. 2 years of new ways. 2 years of unbeatable grace.

And 2 years extra.

My emotions still wreak havoc at the most inappropriate times, and its harder now than before because I had the top excuse then!  My memory is so shot – a severe side effect of a trauma, I have since learnt, but it’s hard to explain that all the time, and tedious.  I seem to have lost the ability to “care” about trivial things – still not sure if this is not such a bad thing, but it’s a big change for me.  I have this thought process that occurs in lightening speed when a tricky situation is presented to me – “go for it – you may not be able to do it tomorrow”.  It’s almost obsessive.  My house is a tip – s0mething you would never have seen before, but now seems so minor in the scheme of things.

Golly so much has happened, so much.  I visited a very special friend in ICU a while ago and had to almost literally pull myself out of my body and push myself through the doors, PTSD hitting me like that trusty cricket bat used to in the first few months.  The thing that got me the most was the telephone at the nurses station had the same ring tone.

I was riding the other day and could see in the distance a vehicle recently smashed up.  Cricket bat to the chest again.

Tom phoned today to say that he was feeling alot better after a nasty cold.  Remember he can’t cough and we have to physically push his chest at the same time as he forces air out of his mouth.  He mentioned the word pneumonia.  Tears. Cricket bat. Chest.  Now when Tom was in hospital it would have been easy for me to say that pneumonia is probably what would have killed him.  Now I can’t say it.  Or did I just?

Christmas came and went, emotionally, I wrapped all the presents, alone late at night,tipped toed around, made sure Father Xmas was fed and beered, something Tom and I used to giggle together doing.

New Years was a scream, spent with our closest friends.  We made it till just before sun rise!  Loads of laughing and banter.  Wow a simple hug from Tom would have made it perfection.  Bloody cricket bat!

Tom has had his birthday.  What the hell do you buy?  Lots of cheese and wine wrapped up in a basket!  But spent with wonderful people.  I still get choked up when I see the men kissing Tom’s forehead – the new hand shake.

Tom and Ciara play chess on his iPad for hours and he is now teaching a bunch of girls at their school how to play one afternoon a week.  No cricket bat here…… just awe.

I do want to write a proper post.. And I will.  And I’ll put pictures.

I remember meeting Tom at O.R.Tambo International being pushed in a manual wheelchair by Gary Futter, his arms crossed on his lap, placed on a pillow to alleviate pressure.  He was so skinny, kind of frightened, but so ready to come home.  Lizzie, that special nurse, who just had to see him off, was with them.  I remember the planning that was involved getting him from Pretoria to Joburg to Home.  The renewed visa issues.  I remember packing up the flat I had been using for months and months.  I remember a few days prior Tom having a stimulation test in the hope that there would be some form of nerve messages being registered and it resulting in a resounding negative.  I remember saying goodbye the day before to the most incredible group of people who had rehabilitated Tom in Pretoria.  I remember leaving a list of things at the hospital that need to be packed in the day bag and those for the suitcase.  The medicines and supplies.  The laptop with the Dragon. The transfer board.

I remember my heart just pounding as we checked in and for the first time I had to say, “My husband is in a wheelchair and we will need assistance boarding”.   Ant, Mark and I lifting Tom into the aircraft seat and strapping him in, being watched by everyone already seated.  It was an emotional time.  We left Bren in the hospital after his bike accident.  We took off, we looked out the window and said goodbye, we cruised at 20000 feet, we landed.  The welcoming party at Harare airport of Tom’s work colleagues in the Tom t-shirts was incredible and overwhelming.  Arriving home to our house, our girls, our family, our dogs, and our domestic staff was so monumental.

I remember the next few months being so incredibly hard, emotionally, physically, practically.  The car transfers until the van arrived, pushing Tom in his wheelchair around the house whenever he needed to be moved, the physiotherapy, the training of carers, the lack of privacy and space, the adjusting, the explaining, the questions, the permanence.  The scores of people through the house – like a train station we called it.  “You know where the fridge/kettle is….. Help yourself”

I remember the meals cooked by my friends that were delivered quietly and without fuss.  The moving of furniture, the new ramps fitted, the setting up of big PC.  I remember the exhaustion I felt and I could literally feel the adrenalin pumping through my body making me move.  I remember feeling so relieved I never had to fly to Joburg and drive to Pretoria to visit Tom.

I remember the first outing we made to the girls’ school for their school plays and the reception Tom got.  I remember wanting to sob my heart out but holding it together.  I remember how tired and uncomfortable Tom got that evening.  Mostly I remember Erin sitting amongst her class mates, dressed as an angel in her Dad’s white shirt with a tinsel halo, banging a musical triangle to the beat, with all her heart and the hugest smile just beaming at her Dad.  I remember Tom giving a talk to the girl’s classes explaining his paralysis.

So here we are, one year later.  At home.  Tom has achieved so much, and as I always say, with such grace.  He has an incredible team around him, Spike his PA, Jimmy his driver, Jane our Gogo, and a carer that enable his day to happen.  Someone once asked me while Tom was still in hospital when I would be packing up and moving.  I remember saying I hadn’t even thought about it.  This is our home; we are surrounded by a huge network of family, friends and staff.  This is our home, we aint going nowhere.

Mostly I remember the breathing you all did so that Tom could eventually make it home.  I am still breathing.   He is still breathing..

The logistics were incredible but the careful planning and openess between us all allowed things to run smoothly.  And it started right from the beginning.  The trip to the airport….. Because the Ralphs and Greenways were leaving early on Saturday we were able to get Tom to Charles Prince airport in his van on Friday morning.  The posse that followed would have made our president proud! We arrived to a gang of young trainee pilots who with lots of instruction and guidance from the many “cooks” got Tom into the back of the light aircraft.  And with some hefty muscles and serious effort the 170kg wheelchair was lifted in too.

The flight was overwhelming, in more ways that I can say.  I found myself sobbing uncontrollably.  Seeing Tom behind me with Erin hugging him was so intense – a feeling of relief that we had made it, a feeling of gut wrenching sadness that this is what our life is, a feeling of joy that our holiday was actually happening, a feeling of bitterness that I was feeling all this.  Tom also cried. And cried.  During the flight I squeezed up next to him and realised I hadn’t sat next to him and felt him on the side of my calf, the side of my thigh, the side of my arm in a sitting position since last May.  I put my head on his shoulder and behind my sunglasses let the tears just stream.

The authorities in Mozambique were so accommodating and allowed us to get a vehicle onto the apron so we could transfer Tom directly for the aircraft to the waiting car.  He went ahead while the rest of us cleared immigration.  Moira our host and Bebe her assistant, were fantastic in making this happen.  We arrived at our destination after a bumpy trip on the sand roads to the fabulous villa’s where we would be spending the next 2 weeks.  Hamish, Moira’s husband had made ramps for easy access into the villa and so maneuverability for Tom was great. Obviously he was unable to get upstairs.

In the two weeks we got Tom down to the beach once.  Again it was packed with logistics but planning ahead made it work.  So into the front seat of the 4X4 he was hoisted and with permission from the next door resort who has access down a boat ramp we were allowed onto the beach.   Out of the car with further huffing and puffing and into the big tube that Bren had brought preciously for this moment.  And then with lots of laughter and some serious muscle power from 6 adults (Wendy taking photo evidence)  we lifted and then hovercrafted Tom along the lengthy sandbank to the sea.  I had brought a hammock which we had placed under Tom in the tube and so we could lift him out and into the water without yanking any of his arms or legs out their sockets.  As Tom cannot feel anything below the line of his shoulders, all he wanted to do was to be dunked under the water.  I grabbed his nose and we literally had to push his entire body under the waterline in order for his to be immersed.  Our bodies naturally float so this took some effort.  He blew bubbles out of his nose and mouth and came up ecstatic. A smile that described it all. He said to have the water over his face and be underwater was wonderful.

Back into the hammock, then into the tube and back up the beach to the umbrella we went.  Laughing (and huffing) all the way.

There were times when I found it all so overbearing and consuming and had to be by myself. As did Tom.  Watching other couples be couples – holding hands, rubbing sun cream, walking on the beach, holding their kids. It’s such a hard emotion to describe – the envy, the wanting, the hate, the love, the repulsion, the loneliness.  Something I work on everyday and get tired doing it.  I just want my hand to be held.

The kids were great, as they always are.  Obviously our girls have so much more to bare but all the other kids are so accepting and see Tom as Tom and they automatically know his boundaries.  Little Chloe has taken months to get close to Tom in his wheelchair but within days was riding on his lap around the garden, just the two of them chatting.  Cams will happily rub Toms head for as long as he wants. They will walk past him with a biscuit or packet of chips and just slip one in his mouth without thinking or feeling uncomfortable.

Back at home now reflecting on our holiday.  The biggest theme that keeps coming through was that we made it.  We actually left the house, left the country and had a proper holiday.  It was incredibly difficult, incredibly relaxing, emotional, jubilant, golly just so many things.  I, we couldn’t have done it alone.  And so to our Framily I say Thank You – you have no idea how much!.

Back at home now reflecting on our life after our holiday.  The girls are back at school and I am back at work, as is Tom.  He tries to get to the office everyday.  Jimmy, his driver and friend, is just marvelous and happily straps Tom into the van with all sorts of harnesses that are necessary for the safety and stability of the wheelchair.  Tom finds it incredibly uncomfortable and actually hates any journey.  We have had to patch up the road outside our house as the potholes cause him to be thrown around too much.  He collects the girls on various days from school and takes Erin to ballet, an afternoon where he can roll around the shops (and notice how many places are not wheelchair friendly).  He made a momentous long haul trip out to a mine a few weeks back, one where he was hoisted into the front of the van for the duration.  What a difference this made to Tom being able to see out the car window and feel stable for any length of time.  Unfortunately the weather got the better of Tom and he overheated somewhat, being unable to regulate his body temperature and needed to be doused in cool towels regularly throughout the day.

The girls are adapting slowly.  Ciara is like her Dad and floats through her day without much fuss just accepting what is and what isn’t.   Erin is struggling.  She mentions on a regular basis how much she misses what she and Dad used to do.  Particularly being bowled over on the bed and buried under the pillows.  This is so so hard to hear and deal with, but she and Tom talk regularly about what has been lost but what is still here.

I struggle with so many things and find myself being a guru at distraction.  Not always. And when it comes, it comes down like a crashing building on top of me.  It’s tiring responding to the world positively and its equally exhausting responding negatively.  Sometimes it is so good to just be quiet.  And sometimes it is so good to belly laugh.   I keep remembering Nicky Futter and her Gratitude List.……. Remember.

Tom has had a rough couple of weeks, its that time of year when the cold weather hits our chests.  Poor Tom cannot cough or clear his throat or lungs.  So some serious percussion physio and jumping and shaking on his chest has occurred.  It hasn’t been pleasant and I have been frightened at times rushing to his bedside in the middle of the night to assist him coughing.  But he is over it and we have learnt some lessons.

We are about to embark on our first ever holiday since Tom’s return.  And to a beautiful place that has special memories.  The glorious Mozambique.  We leave on Friday.  Tom, myself and the girls together with the Malloch Browns will fly while the Greenways and Ralphs will drive.  Tom would not be able to handle the 11 hour drive so we are literally bundling him into a small aircraft while the other drive his van with his wheelchair across the border to the beach.  Its daunting but exciting.  Going with our dearest friends makes it so much easier as they know the drill, what is expected, what can and can’t be done.  And we have been there before so we know what to expect.

Obviously it will be so different.  To get Tom to the beach will be a journey in itself but we shall conquer.  To let him float in the sea with his girls is my goal.  So we will be equipped with floating devices, tubes and what ever else necessary to make this happen.

Its also our 10th wedding anniversary and I truly believe that spending it together with some of  the most special friends we have, in the most spectacular place on the planet, well that’s what I call a blessing.

I still take such deep breaths and feel the oxygen fill my lungs.  What a simple function we take for granted.  I thank the universe that Tom got this back……… even if he can’t feel his chest rising and falling.

Tomorrow I might wake up feeling different but right now I HATE THIS.

I got home today and Tom was in clean up mode.  He had decided it was time to purge.  So I emptied his entire wardrobe and held up each and every piece of clothing.  There was an Out Pile, a Maybe Pile and a Keep Pile.  Our criteria for throwing or keeping was simply size.  Tom’s belly is growing into what is called a “Quad Belly”.  Because he has no muscle control, and no ability to burn fat by exercising,  his belly is expanding.  It’s not like Tom at all, as he was always a fit man.  Anyway as the Out Pile got higher and higher and the Keep Pile became defined as more and more practical gear, I got more and more reminiscent.  ”Remember this t-shirt….. Oh I love you in that shirt…… you wore that tie at …………. No point in keeping that we can’t get your head into it…………  We  got to the end and then attacked the Maybe Pile.  Tom’s words were “I have no need for possessions”.  The entire pile was binned.  It shot me threw the heart.

On our way home, Al and I bumped into Clint who now lives in Sydney.  I don’t know him well but without words he gave me the tightest hug, saying everything.

What a beautiful lesson.

I’ve been lying in bed late most nights replaying that phone-call and reliving those vile hours that followed.  I’m eaten up with panic and fear and nausea.  I’m dreading the 5th of May.  I question why all the time.  Why will the 5th be any different to today, I will still feel that panic and fear and nausea.  Then I think it’ll just be another day, I’ll busy myself and then it will be over.  I’ll wake up on the 6th and it’ll be over.

Everyday I write a message on this website, in my mind.  Everyday I spill my guts out.   Everyday I feel these intense emotions well up in my stomach and erupt out my eyes flowing down my cheeks until I can’t breathe through my nose anymore.  And everyday I never write anything because I realise whether those feelings are written down or not, they are still felt.  I realise its unfair to put my feelings into words for all to consume.  It probably also amounts to the fact that I don’t think I want you to know that I see couples holding hands and swaying to a song and how much I miss that and that I wonder if you even know you are holding hands or if it’s just habit.  It’s so cruel that I can hold hands with Tom and if he has his eyes closed he doesn’t even know I’m attached to him.

How can tomorrow coming make me feel any better?  It’s incredibly tiring constantly being asked how is Tom.  Am I ever actually going to be able to say, “He’s great, just dandy thanks.  How can I not want you to ask how he is?  Then you don’t care.  And you’ve got to care.  I couldn’t do this without your caring.  I remember the outpouring of love, care, concern, disbelief, shock, revolt, all those feelings felt from all over the world pushed me up those hills ( remember those hills?…) and rode the bumpy ride with me down those mountains…..

I’m tired of all things, and within a split second, grateful for each and every one of them. I’m tired of carving the chicken.  I’m tired of turning on the generator, I’m tired of tucking in the girls, I’m tired of picking up the pizza, I’m tired of that buzzing mosquito that I’ve swatted every night, I’m tired of answering the phone, I’m tired of making a plan.  Oh there are so many things.  Oh how lucky I am………

Tom has just rushed past (in his wheelchair. Obviously! ) with Erin balanced on the back wheels and I was consumed with happiness. I smiled and laughed.  It’s all about adapting, isn’t it?  They have the same need for speed and how special they still get to do it together – even if it’s in this warped new way.

The 5th will come and go but Tom gets to spend it with those people who stopped their lives on that night, that whole vile night, for him and for me.  It will come every year and every year I suspect the panic and fear and nausea will lessen.

Open house at our place this Saturday the 8th May from 12 o’clock onwards,  bring drinks and something to braai.  Bring smiles. Come for a minute, come for the day. Come for a laugh, come for a cry.  But most of all please come so we can, at last, thank you for all those breaths you took.  If you can, let me know you’ll be coming. RSVP on the website, or my cell or Tom’s cell, or email tomandsal@zol.co.zw.

I’ve just taken a deep breath.  It helps.

Tom’s pressure sore is still a problem.  A really big problem.  It’s now about 8 weeks since it reared its ugly red mark which has now turned into a superficial but persistant wound.  Because of its position – on his bum – Tom can’t spend much time sitting in his chair.  This is obviously really difficult for him and trying to work on his computer lying down is not at all ideal.  It also means trips out, have to be planned in advance.  We are trying different therapies, Granuflex, trusty mercurochrome, sudocream, others have suggested prep shaving cream, bovril, honey – which he is now trying.  Tom has purchased a Bioptron light which encourages rejuvenation of the cells. This has shown some slow but positive change.

Unfortunatley because of this pressure sore Tom has been unable to use his bike.  It would cause too much friction with his legs moving to and fro.  Anyway it’ll be the first thing to hook up when its disappeared.  And so his daily exercises of passive moves carried out by his carer’s, Anna or Janet will continue.  If these are not kept up he spasms so much and this causes alot of discomfort.  The spasms refer up to his neck where he has feeling.  These involutary spasms are quite frightening at first if you don’t understand them.  So many people have jumped back in shock and said “Tom you moved, did you see that!”  They are sometimes so severe it takes all of my strength to get his leg back to a bending position.  Unfortunately it doesn’t mean anything for the future. 

He has decided to look into purchasing a tilt table.  He would be strapped onto a flat plinth that slowly, either manually or electrically, tilts him from 180 degrees to nearly 90 degrees.  This would assist largely with his blood pressure issues, his bone density as he would now be bearing weight on his legs,  he would be able to work on his computer in an upright position and hence get a different perspective!  He could do this to a certain degree in his “standing wheelchair” but because of its design, the pressure sore is at risk.

Tom being a very keen reader misses reading books terribly.  He’s just got something called a Kindle that has made a huge difference to this love of his.  It’s like a small laptop but without the glare a computer gives.  It’s used specifically for reading books, and with the help of a long stick with a rubber end to avoid slipping, from his mouth he is able to “turn the pages”.  He can now do what he used to do and read stories to the girls at bed time.  The Hobbit is going well!

We’ve each had our birthdays’, Tom’s in February, mine a few days ago.  I spent the morning of mine in tears, uncontrollable tears.  I think it must have been one of those FIRST’s people say we need to get through.  But my dinner this last Friday night was spent with my family and friends and I laughed and laughed and laughed.  So these emotions come and go, many times a day. 

A routine is difficult when emotions rule.