Tenderness...

A Father's Love
A father is respected because
he gives his children leadership...
appreciated because
he gives his children care...
valued because
he gives his children time...
loved because
he gives his children the one thing
they treasure most - himself.

I write every day. Some feelings are too dark, some experiences too personal, some thoughts are better left as thoughts...

I left the hospital the other night being mocked by my wife. She was laughing at me, remembering a time when Lincolne was still in nappies. I was on duty from first light Saturday morning. In summer I'd get up, take him straight out into the backyard and stand him on the grass. Then off with the nappy and out with the hose. I know this sounds feral, but I was a young father, 23, and it just seemed better to do it this way. It was quick, simple, no fussing and no need to pay attention to detail.

Sharon was mocking the detail of our new nightly ritual to ready Lincolne for sleep. First a warm face wash, being careful around the eyes and behind the neck where his wound is. The ears get done inside, out and behind. All dried with a soft towel. Very carefully I use a cotton bud inside his ears and nose. Then I brush his teeth, he rinses and spits into a cup, not spilling a drop. Paw paw ointment is applied to his nose around the outside of his nostrils, where the skin dries and becomes red and irritated. Eucalyptus balm on his lips, a sprinkle of eucalyptus oil on his pillow next to his head, "breatheasy" on a tissue under his nose for a few minutes (at 1.5 litres, his lung capacity is a third of most people, and not enough to clear his nose by blowing). I massage and stretch his arms, hands and fingers, and I elevate them on pillows for the night. I do the same for his legs, feet and toes. Most nights his legs spasm when I rub the soles of his feet. For an instant I am excited and think we have our miracle. I say "did you do that?", he says "I wish". So we pray again for the miracle together. I put his left earphone on, and press play on his iPhone. He says "thanks dad, I love you" I say "it's my pleasure, I love you too mate, see you at breakfast". The dialogue is much the same every night and I never tire of it, though I leave the hospital exhausted.

There is no improvement here, just constant learning and training - how to live with the disability. Today we went to St Leonard's Train Station in his powered chair. It was his first time off hospital grounds. It may sound like progress, but it is not, it's improvisation. That said, he's so excited because there's a Nando's at the Station, his favourite kind of chicken. Before we could take him we had to sit thorough a session on autonomic dysreflexia. It's a condition of sudden high blood pressure. The result of distress in his body below the injury, where he has no feeling. It's his body's new way of signalling something is wrong, even if it can't identify where. It's very dangerous, possibly causing fit, brain haemorrhage or worse if not treated instantly. He must now carry a glyceryl trinitate spray every where he goes, this will give him/us about 10 minutes to get him to a hospital.

Gym remains tough for Lincolne. On Wednesday he managed 11 seconds unassisted on the hand cycle, up from 6 seconds the previous Friday. He has 10 minutes in total on the hand cycle, then 15 on the powered bike, which usually makes him pale and sick. His feet are strapped to the pedals, then the pedals rotate on their own. Sounds simple enough for you or I, but for someone in Lincolne's condition, where just sitting up in a chair is tiring, this is utterly exhausting and sometimes humiliating. Then a happy moment, Lincolne in the gym socialising and laughing after the workout with other spinal patients. One para, Matt, was in his wheelchair doing wheelies and giving his mother a heart attack. He's 22, bought a motorbike and a week later became a paraplegic. Mostly he looks angry and lost. In over two weeks, I'd never seen him smile till that moment.

I have a memory that keeps playing itself over and over in my in my head. My family were holidaying at Emerald Beach just north of Coffs Harbour. It was a hot day and the sky was clear. We were on the beach, Sharon on a towel reading a book. Some of the kids were swimming, some building a castle. Lincolne and I were playing soccer. We'd marked the boundary hopping backwards and digging the heel of one foot deeply in the soft sand. Towels were used as goal markers. We were engaged, active, hot and sweaty. Lincolne was killing me. He was so fit, fast and agile. It seemed like we played for hours. My heart rate was through the roof, it was a still and almost silent day, except for the light waves and my heavy breath. Lincolne was 15. That was a really good day and I mourn in thinking about.

Watching my son's motionless body, dissolving day after day tears me apart. His tendons are beginning to shorten and require more frequent massage and stretching. If we don't do it, it won't get done. I keep trying to create some time to get back to work, that space immediately gets taken with something else. Things I have to do to make life easier for him when he walks again.

Sharing the load ...

I was late to the hospital yesterday, 8:07am. Sharon planned to be there early so Kodi could feed Lincolne breakfast before she heads back to Queensland. For two years they’ve maintained a long distance relationship. In the past, when I ask him what he likes about Kodi he give me that “are you an idiot?” look. Then a cheeky smile comes across his face and he replies “she’s pretty hot”. He may not have expressed it to me but there’s a lot more depth to the relationship then he was letting on. If Lincolne was going to hurt his neck it was because he was on the phone to Kodi. Whether he was frying an egg, playing computer games or laying in bed, his neck would be cranked, holding the phone to his shoulder, talking to Kodi. They would talk on the phone for hours at a time, every day, and spend a small fortune travelling to see each other. She is his happy, the thing he looks forward to most in his life. It began as an online relationship, then Lincolne baptising Kodi into our church just over a year ago. Before Lincolne was 18 I would fly to Queensland with him as chaperone. He hated it. I loved it. Kodi lived at the top of Tamborine Mountain. I’d take my bike and ride the mountain, sometimes with Kodi’s mum. I was enforcing curfews and seriously cramping his style.

Kodi is very bright, and about to walk away from a scholarship to study business and psychology. She will move to the Central Coast and live with her grandmother to be closer to Lincolne. She was heard talking to the physios in the gym day before yesterday. She’s grilling them with questions about their career, contemplating becoming a physiotherapist so she’d be more help for Lincolne. I don’t know if she’s making the right choices but, to use the words of her father “who am I to stand in the way of love”. Sharon & I have the deepest heartfelt gratitude for her. Her being here gives him so much hope and motivation for the future.

So I arrived at the hospital and Lincolne didn’t need me. I figured I’d go into the room and help anyway, maybe Cobie with her breakfast, or Jonathan, or the new roomie, Phillip (more about him another time). No, they were all covered and I felt redundant. It’s a pretty low point in the day when you are in a room with four new quads and none of them need your help. Cobie teased me. Truthfully, who would you rather serve you breakfast, some old wanna be who’d like to look like Hugh Jackman but really looks like Murray Wiggle, or Kodi?

Tony could see I was down and offered for me to help him pack gloves after breakfast. He’s a volunteer at the hospital. He is old, he is short, he is bald, but has an enormous genuine heart and bright lively eyes. He’s always happy, the happy that comes from a life of serving others, the kind that money can’t create or destroy. He packed the gloves without me.

Lincolne is almost ready to leave acute spinal care and move on to the rehabilitation unit at Ryde. Once he has mastered his electric wheel chair they will put him on the waiting list, probably Thursday. The list is ordered by accident date. Cobie has been on the list for a couple of weeks, a place became available Monday and she was eager to go, but had a small complication with her injury so it went to someone else. We’ve been told it could take a couple of months for Lincolne to get a spot. We have the best private health cover money can buy and end up on a list just the same. I’d be angry if the staff at the hospital and his roomies weren’t so endearing.

As the pain management is dialled down, Lincolne becomes more and more alert, and I find myself slipping into the old methods of fatherhood, where I fight not to project my aspirations for him too strongly. Years ago I’d tell him what he should do, how he should do it, what he should be. It drove a wedge between us and our relationship suffered enormously. He’s my oldest son, I made all the mistakes of fatherhood on him and I was paying a terrible price. It reached its worst when he was in year eleven and I became worried about his future. At the end of year eleven, after discussing the state of our relationship with Sharon and my good friend Bill, I decided to step back. I would support and encourage him with as much as I could, and let the rest slide. It took enormous discipline, but I rediscovered what a fantastic guy his is, his artistic flair and felt I’d got the love of my son back. I have apologised many times for the way I treated him, he forgives with a “that’s cool dad”, but you never really forgive yourself for the scars and heartache you cause. At a family night a couple of years ago Sharon asked the kids what they like about their father, I can’t remember who responded but they said “he doesn’t get angry or shout anymore”. Two years later, being asked the same question I feel pleased with the certainty that those two words, shouting and angry, wouldn’t even feature in the response. I’m still learning, but I’m a better father than I used to be, and I will continue support and encourage him with the things I can.

Lincolne’s cycle, wake up happy and full of energy at 8am, eat breakfast, toilet, shower, back in bed. All that takes three to four hours for his room. Eat lunch then into his chair ready for the gym by 2pm. The energy levels and happiness drop from here. Gym is and hour long, all the time spent with physiotherapists strengthening his muscles and stretching to ensure full range of motion. Then he's with the occupational therapist, who teaches him how to use what he has to assist his living and work toward independence. This is the most exhausting because it requires focus and concentration. By 3:30pm he's spent and drifts in and out of sleep for a few hours. By 6pm he has his energy back, ready for dinner and at his most entertaining, charming self. 9pm visitors get the boot, 10:30pm I get the boot and he's ready for bed. Through the day and night he is "turned" every three hours to prevent bed sores.

I stayed at home for the first time in 12 days last night. The house is full of flowers and food. I'm overcome by the generosity of others, allowing the family more time together, and better able to cope with the new life. I slept in this morning and rose feeling so guilty it made me sick, worrying whether Sharon got to the hospital in time to feed him breakfast. Will she remember to wipe his face, carefully around they eyes? Stupid I know, feeling redundant still. Today I’m looking forward to breakfast at a café with my daughters, then back to the hospital. Contemplating what the weather at Cradle Mountain is like.

10th Feb Heroes on the battlefield of life...

"You don't raise heroes, you raise sons. If you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes."

Author: Walter Schirra Sr.

Might I add that Lincolne is teaching us all along the way about grace and grit, being a hero in the everyday battles that face many in this world, is, in my opinion the hardest battle of life. You speak so loudly to so many in the way you are living and those of us watching can learn, if we are wise, and unveil great treasures that lift our hearts and minds to the heavens seeking for the truths that can change our own lives, we now carry a prayer in our hearts, a prayer of hope, a prayer that almost pleads that we will treasure these precious lessons of life and not look back...
Grant shares such beautiful insights as you will know by now and I am so grateful for the time taken to share them with us.

I park the car, walk into the hospital and wait at the lift, surrounded by people. I look at as many as I can, especially the sad ones, try to make eye contact and smile. We enter the lift and sure enough they push the 6, intensive care, 7, spinal or 9 pain management/burns.

Using the movement he has in his shoulders and biceps Lincolne managed to turn hand pedals unassisted for 6 seconds yesterday. He worked so hard at the gym he made himself vomit a couple of times. There is a saying - most wars are won before you set foot on the battlefield. Lincolne remains positive, is determined to do all he can to make the most of what he's got and give himself the best chance of recovery. I remain amazed at his courage and determination, if anyone is ready for this fight, Lincolne is.

The doctors also wanted to meet with us. They'd charted all the sensory areas on Lincolne's body which confirmed an incomplete C4 injury, any movement or feeling he had from the shoulders down is a bonus. He has some movement, his biceps. This could improve when the swelling and edema has subsided, which could take many months, maybe years, but improvement is very low probability. The doctors also ordered Sharon & I to get more sleep and rest. So I better go do that.

8th Feb an angel arrived ...

Oscar Wilde
Keep love in your heart. A life without it is like a sunless garden when the flowers are dead. The consciousness of loving and being loved brings a warmth and a richness to life that nothing else can bring.

 

I parted the curtain at 8am to see my son sleeping soundly, the food trolley was nowhere to be seen so I went for a stroll. Hoards of people dressed in gym gear were piling out of the lift and heading down a corridor. I was curious and followed. Seamlessly they blended into a crowd walking counter-clockwise in a circle. Down the corridor, left through the gym, left through the back door and back down the corridor. They looked fit and smiled as they said hello on passing. No music, just walking and moving their arms as if trying to stay afloat in the ocean. I stopped and chatted to a nurse who was organizing the quiet, harmonious group. It was a gym class held every Tuesday, Thursday and Friday for prior patients who'd had cardiac surgery. Part of what some call the zipper club. I was invited to attend.

I waited for a break and moved against the current out of their way into an alcove. I loitered briefly and overheard "Who was that lovely young man who greeted us this morning?" Then "His son is...." I couldn't quite make out the rest but I'm sure one of them said I looked like Hugh Jackman. Maybe they said patients who'd had cataract surgery.

I parted the curtain at 8am to see my son sleeping soundly, the food trolley was nowhere to be seen so I went for a stroll. Hoards of people dressed in gym gear were piling out of the lift and heading down a corridor. I was curious and followed. Seamlessly they blended into a crowd walking counter-clockwise in a circle. Down the corridor, left through the gym, left through the back door and back down the corridor. They looked fit and smiled as they said hello on passing. No music, just walking and moving their arms as if trying to stay afloat in the ocean. I stopped and chatted to a nurse who was organizing the quiet, harmonious group. It was a gym class held every Tuesday, Thursday and Friday for prior patients who'd had cardiac surgery. Part of what some call the zipper club. I was invited to attend.

I waited for a break and moved against the current out of their way into an alcove. I loitered briefly and overheard "Who was that lovely young man who greeted us this morning?" Then "His son is...." I couldn't quite make out the rest but I'm sure one of them said I looked like Hugh Jackman. Maybe they said patients who'd had cataract surgery.

Lincolne slept well till 4:30 when he got hot, knocked the buzzer and the nurse came and removed his neck brace. With it off he felt a building pain and spent the next 20 minutes trying to knock the same buzzer. He has movement at the shoulder and limited movement at the elbow. We were laughing as he explained how he eventually moved his hand right up near his head and then flung his arm at the buzzer, striking it. He reckons it would have clocked a few views on YouTube. Needless to say he didn't sleep well for the balance of the night.

The morning routine is simple enough. I raise his bed, wipe his eyes with a damp cloth, pop his pills and herbal drops. I then give him a small amount of food, then a small amount of fluid, then wipe around his mouth. This is repeated till he's full, which takes about half an hour and a quarter as much food as it did prior to the injury. He tells me to slow down and likes to talk between mouthfuls. I then lay his clothes on his bed, make sure he is comfortable, scratch his nose, put balm on his lips, check his arms and legs, pray with him and leave. "I love you dad". I manage to keep it together and reply "I love you mate, see you at 12" He says "Good!", then I walk out and lose it.

He had a better experience at the gym today, working so hard he puked. He received his electric wheel chair (stay off the pavement!) and was visited by many family and friends including a surprise visit from his girlfriend Kodi from Queensland. The doctors also visited, no improvement, just progressing through the rehabilitation process.

Every day I hear a new story that brings me hope, like that of Patrick Rummerfield. A quad for 3 years before he began to walk and use his hands again, and eventually completed an ironman triathlon. Every day I also hear a new story from a long term quad - a life with pain, complication, degradation, but always with friends and happiness.

Tonight when I came in to ready him for sleep the nurses had pushed him to the side of the bed. He was cuddling his sweetheart Kodi and was very happy. The colour is back in his face and for the first time in a week he looked like the same handsome man we all know. I take great care cleaning his ears. He can't blow his nose. His now limited lung capacity makes this impossible. He has splints for his hands at night to stop the fingers clawing.

Lincolne prayed tonight, he thanked God for his many blessings and asked that He bless family and friends who are in distress because of his injury to be comforted. He also prayed that he may recover enough, quickly to move onto the rehab center so that he can continue to progress.

7th Feb "Night Nght Lincolne, I love you."

 Just put my big boy to sleep - gave him a drink, helped him take his shirt off, tucked him into bed and kissed him goodnight. "Love you dad", just like when he was little and didn't want me to leave his room. He had that one more story please look in his eyes. For the first time in a week I'm not staying at the hospital and we're feeling it. Still, I'm half expecting him to crawl out of bed and find me with a Peter Pan book in his hands. We watched a DVD tonight, ate some junk food and chatted till I got kicked out - well after visiting hours had ended.

We moved up to the spinal ward yesterday just after lunch. Up till that point Lincolne was having a good day. I walked in as they were just about finished putting him into the chair to move him in. One Nurse was trying to shove an oversized pillow behind his head, another was supporting it with one had stretching over another patients machine - no idea what it did, reminded me of something out of Charlie and the chocolate factory "I want an everlasting gob stopper now!". Lincolne was in pain and he never quite recovered for the balance of the day. Shame it wasn't the fizzy lifting drink machine.

Spinal ward is hip. All the staff are "UP". It's a very positive place. Except it was opened in 1887 and the roof above Lincolne looks like it may be recycled from one of the original urinals. The waiting room however has a nice plasma and is better suited to Innis assemblies. Al, his nurse from this morning, who was obviously there for the opening, expressed, "Linc said he's into bodybuilding and his girlfriend does some modeling ... whatever buddy, there's no heroes here".

Young Jonathan, in the bed across from Lincolne had a trampoline accident. He was training for the trials that determine who will go to London for the Australian team. Young Cobie was having her photo taken with family Christmas day. They were on the balcony, resting on the rail. Her father and brother in law were pretending to wrestle to avoid being in the shot. They hit the rail, Cobie and her two sisters fell. Grant, the other patient in the room, has been a quad for 12 years. He suffers severe pain as a result of his ongoing injuries. Everyone has a story, they all need working hands. Lunch was fun, feeding Lincolne a beef stew, and Cobie lasagna. Wiping two faces, cleaning Cobie's spill, smiling and happy, momentarily to be having the experience.

Lincolne had his first session in the gym today. He had 15 minutes on the powered stationary bike. I was excited with visions of Eddy Merckx riding around in my head. He was spent and ready to go back to bed. Still, a bigger champion to me is the man who, as Rudyard Kipling puts so perfectly in his poem titled If "...if you can meet with triumph and disaster and treat those two impostors just the same...or watch the things you gave your life to broken, and stoop and build 'em up again ...and lose and start again at your beginnings and never breath a word about your loss..." If you know this poem, perhaps better than I, you will know what I mean when I say, that despite the many ways I express how it seems I have my little son back, I don't.

‎5/2/12Days are passing so fast. Feels like 3 but on the 6th. Sunday today, thinking about God, wondering what he has in store for us...
Lincolne spent 3 hours in a chair yesterday and he's off the dripped meds, which is good because he's not hooked up to anything except monitors. I don't think he'll get out of ICU today more because of Hospital resources than his condition, but they are trying,... fingers crossed. His blood pressure remains low, he is constantly tired and is thinking more about the journey ahead of him. He's pieced together a plan for full recovery, he knows what he can do, he knows what we can do, the rest is up to God. Sharon & I also have a plan, ours caters to a few more contingencies and leaves God with a few more options.
I got to see the physio help him cough and do breathing exercises last night. She was brutal, like a cage fighter doing the ground and pound - but he coughed up more "stuff" and for the first time all his air passages are clear. Afterwards Lincolne said that when he gets out of here he'd like to do some boxing or martial arts, maybe he wants to get her back.
Lincolne is taking it in his stride. He's maintained a happy disposition and unusual tolerance, except when his mum spills OJ down his neck brace. For someone who prefers to mostly avoid physical contact he's coping well with having his teeth brushed and other personal care handled by others. He says he needs to have a big stretch...but can't.
ICU never sleeps. Crazy place with a bunch of smart people looking after mostly crazy people - I never said that. I met relatives of the new tenants this morning. One mother's son was firebombed. Another's husband tried to hang himself. I was just hugging her while she was sobbing uncontrollably. When she composed herself she just let it all out, two kids, 4 & 7, and a mother in law who was upset with her because she couldn't keep it together. Another young kid, 21, was here for his brother who'd fallen and knocked himself out. But his real story - 3rd of 5 boys all with different fathers. His eldest brother the father figure was stabbed 4 years ago. When he recovered he shot his attacker and has spent the last 4 years in prison. He's a nice kid, makes a very good living as a drug runner, but thinking about a different path that may be better for his little brothers. It was a long morning in the waiting room, but I don't feel so bad about having to wait 3 hours to see Lincolne after all.
The guy in the bed across from Lincolne is worried about his garbage bins!Just heard, looks like Lincolne will go up to the spinal ward by lunchtime!

ICU February 4th

Lincolne is still in ICU, still no progress, still running my fingers through his hair to help him sleep at night, hoping soon I'll be able to help him walk. Yesterdays highlights included coughing up blood and sand, sitting up for extended periods, drains and stitches being taken out of the wound in his neck and eating solids. We will keep the low lights to ourselves for now. He's good early in t...he morning, good in the late evening and rides an emotional and painful roller coaster throughout the day.

His girlfriend of two years is down from Queensland. I tell my boys to turn girlfriends over frequently but feeling glad he stuck to his plan to ignore my advice for the rest of his life and hang on to this one. Cody has been incredible, so strong & supportive.

His friend Jess is amazing, he wouldn't be alive if Jess hadn't spotted him face down in the water. She knows the potential of the man inside the broken body and continues to remind him that the person inside is what we all value.

His mates have been camped at the hospital for two days, he'd felt too vulnerable to see them until late last night. Thanks to Liam, Daniel, Brandon, Dennis, James, DJ, Stefan, Matt & Humza for saving my sons life, loving him like brothers and being patient.

There is much heartache in front of us, but, more importantly, learning, experience, refining of character, friendship and, God willing, maybe a miracle.

We find it hard to respond to the many offers for help and messages of concern, strength, encouragement and love. We read or listen to all of them. None go unnoticed all are greatly appreciated and a necessary support for us at this time. You have all been so generous. Returning calls is the hardest, not because of time, but emotionally it is difficult.

Until his blood pressure stabilises he'll be in ICU. They keep it high using a drug called Nordrenalin, which they had to increase overnight. While in ICU visits are very restricted and need to be short. So it is best to leave visits till he's in the spinal ward.

Much love and thanks to all,

Praying for Miracles...

Our lives takes twists and turns that we cannot foresee and some may say that we cannot prepare for. "How can you prepare for a devastaing blow like this ?" Completely blindsided by this catastrophic event! There are others who believe that like a beautiful tapestry, thread by thread the preparation is happenning.Sometimes all we can see with our limited vision is the reverse of the tapestry with all its stitches crossing over one another and not seeming to make much sense, sometimes all we see is a mess filled with mistakes.When the tapestry is viewed from the other side, where Heavenly Father can see each individual stitch and how it adds to the beautiful masterpiece as a whole it is a wonder to behold, something truly beautiful is in the midst of creation and it is breathtaking and perfect in every way.
Preparation has come with each family prayer offered, with each family home evening.With lessons in fasting and faith in being meek not weak. With parents putting family first. Teaching their children to what source to look for their self-esteem, for guidance, for direction. These are the threads that save us in the end. That help us hold on when storms come, that anchor us to a sure foundation. When we experience these deep, trying gethsemene moments,because we are already anchored in we will feel the strength of the mighty storm but will not be swept away completely.
What an honour it is to know such a family as this. To witness a family rallying around and holding each other tight in this storm. To each of you we offer a little piece of who we are and pray that it will bouy you up a little.
This blog is to allow the world to glimpse a journey of true heroes, our everyday heroes. Those who have suffered bitter blows and shown true grit, true courage and true humility. Our thoughts and prayers go to all who are fighting this battle of belief, that they can and will conqour against all odds. Whatever those battles are whether great or small, we are here to cheer you on and do all we can.
The narrative below was written by Lincolne's father and we will continue to post his words, words that are deeply personal and heartfelt but that will give opportunity to hear first hand of this life changing experience and how it has and will change their lives forever...

February 1st 2012
Dear family and friends, many of you already know, my eldest son Lincolne injured his spine yesterday, diving into shallow water at the beach. He was flown by helicopter from Hawkes Nest to Royal NS Hospital. He has two broken vertebrae and was operated on late last night. The surgery went well but he has a very serious injury and needs a miracle. Please pray for him.