Life
As you may or may not know we have a little five-year-old boy called Samuel. He has severe cerebral palsy. He is totally dependent on us for all of his daily needs. What does this mean? Let me tell you.

He cannot walk and needs a wheel chair. He needs to be placed in the wheel chair and pushed around. He cannot crawl in any way. He is able to roll over sometimes or he crooks his head in the direction he wants to look.

He cannot eat by himself or go to the to toilet. He is in nappies (diapers). He has a button attached to a tube to feed him directly to his stomach.

He cannot speak. He smiles, laughs or cries to communicate so we can never ask him what he is feeling. His sight is impaired and falls in to the category of being blind. He sees things in a jumbled manner.

He has Osteoporosis so his bones are not strong because he does not walk and eat very well. This is why he has a button. His muscles are very tight. This is to the point of his legs scissoring and therefore his hip is out of place.

He can only really use one arm and with great effort. His left arm is all but useless and both arms are very tight like his legs. Overall his movement is limited to turning on his side or arching his body when he gets excited.

He has seizure activity in his brain, which sometimes has lead to fits because the drug that helps loosen his limbs has that side effect. When he gets tight he may wake up crying up to 12 times in a single night.

He has a learning delay and is years behind where he should be. This is probably part of the original damage to his brain and perhaps his many other disabilities.

Perspective
All of the above puts life in perspective. Spare a thought for families who have children worse than Samuel. Yes, there are worse and I acknowledge this and do not feel sorry for Samuel or myself. I am merely stating the facts to help you see things in perspective and to challenge your life and mine out of mediocrity.

We complain about traffic, bad drivers, our neighbours, our bosses, our spouses, taxes, car spaces, the weather, our government, etc etc etc. We live in our own small world occupied by me, myself and I. We are unhappy and die that way because we cannot see past the end of our noses to see anyone else’s life unless it somehow benefits our own.

Sorry to burst the bubble. I am as selfish as anyone reading this so don’t think I am high and mighty somehow.

The Journey to Beauty from Ashes - Ashes
What gives us opportunity to see past our small lives? Hurt and suffering! I am not thankful for all the bad things that have happened but for what it has started to do in my life. I have begun to think about others, love my family and love life again.

Sure, at the beginning I screamed at God and blamed Him for it all and demanded that He give me an answer right then and there. I yelled at Him more for not doing anything about it. I held hate towards the world that I lived in, and believed we should all be nuked from outer space! I would drink myself into a stupor more than often and evacuated my mind from all but life supporting activities.

What I am writing about is a journey. A process. We all are going somewhere even if we are going nowhere. Life moves and I have been the chief of wasting it. I blamed my son’s life for my own. You can either allow the suffering to develop character in you and cry out to God or you can become bitter and unforgiving and end up like that character from the Lord of the Rings – Gollum. His suffering twisted his life and his perspective on it.

It is the decision we make. What do we do with our suffering? Do we allow it to eat us alive and pay some medical professional 200 bucks an hour to tell us we need to let it go or do we use it for others benefit? I think I will make a difference to my world for the better. What will you do?

The Journey to Beauty from Ashes - Beauty
Let us get back to my little boy Samuel. He has the most treasured personality I know. He is so very special and his smile can warm your heart. He loves watching the Hooley Dooleys, Hi-Five, Sale of the Century and Wheel of Fortune. He is famous on the Internet and has been the focus of TV and radio.

He adores singing especially when his mummy and daddy sing to him. No one loves a kiss and cuddle more than him. He is happy to just sit on our knee and be held. When he laughs his whole body laughs with him. He laughs a lot.

He looks forward to going to school every day and almost always enjoys being there. He won an award for good switch pressing on the computer! His bus driver, caregiver, teachers and nurses rave about him. Medical staff that looked after Samuel five years ago still ask about him. Two weeks ago he was off school for an operation and his bus driver called to see how he was! Everyone he meets he changes. His life has affected scores of people and his story may have touched hundreds more.

Parents of preemies everywhere have written to thank me for sharing his story and our lives. He recently won the hearts of over a hundred people at a fund raising dinner. A concreter donated our ramp because he was moved. Wherever he goes he changes his world. He is a truly beautiful child.

I have shared his story and our life with many people and they have been inspired and their hearts warmed. It has challenged others to not give up and go on even though life has treated them harshly. I do not believe I have even begun.

We are determined to change our little part of the world. We cry, we sob, we get angry, we lash out and we sometimes do not know how we can go on. But someone else may need our lives to help them go on.

Back then I was bitter, angry and so very down. Now I am hurt but not bitter, down but not out. I feel alive like never before in my life. I appreciate the sunsets and a good meal with friends. My wife and I still go out and enjoy life like anyone else.

About Terry Tremethick

Terry Tremethick, his wife Karla and two sons, Samuel and Aidan live in Australia. Professionally, Terry is a Network Administrator. He enjoys spending time with his family, swimming, the Internet and educating other parents of premature infants through his writing. You can read his story, Feelings of a Preemie Parent in the book Living Miracles: Stories of Hope from Parents of Premature Babies.