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.