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Wednesday, October 22, 2014

Living Beyond Expectations

Posted by Stephanie on February 3, 2010

My son, Gaelon, outlived every expectation of the doctors. One doctor said that it was because of me and my ‘willing’ him to live. After reading On Dying, Mothers, and Fighting for Your Ideas by Johathan Morrow, I now understand what the doctor meant by that.

Gaelon was born with a ‘problem’ that, at his birth, was not apparent. It became increasingly obvious that something was up by the time that he was 6 months of age. Tests were done, medical treatment was trialed but nothing helped … until, that is … he was diagnosed correctly.

In I one brief conversation with the doctor we went from a happy little family to a family in despair. The doctor had a Social Worker join the meeting. I thought that was odd at the time but the doctor explained that the Social Worker was not a doctor and so if she, the doctor, got too technical the Social Worker could get clarification. We were about to be told that our 15 month old son was terminally ill. He had perhaps a few years on this earth. No wonder the doctor had backup.

The room began to whirl, nothing that was said after that registered. Shock took over and I was numb. He was OK, look, he’s playing. This couldn’t be right. My whole world fell apart. NOOOO

When I got home, still numb, I couldn’t face telling the rest of the family. We decided to give it a few days before we faced that hurdle. We cried. Life wasn’t fair. Someone stuffed up. Tests were wrong. This couldn’t be happening.

I actually slept that night, exhausted. I learned there was a new kind of tired. When I woke up in the morning there was an all-to-brief period between waking up and BEING awake, where the world was OK, the day was cheery, all life was well. Then, as the awakening began the BAD news occurred all over again and the happy shutters slammed down, the darkness of the abyss took over, again. Some mornings I would have this happy twilight stage but as time grew longer it disappeared altogether.

The rest of the family needed to be told, that was hard. We chose to do it face-to-face and not over the phone. Teas and coffees were made. We talked, questions were asked that we didn’t even know the answer to, yet. Our drinks went cold. I watched each member of the family crash in turn. After the initial shock, the crying began and tissues were passed around by the dozen. What could we DO. Nothing but hope for the best. Cry and pray.

The Social Work department became my first port of call. If ever I had to get a mountain or two moved. Inside and outside the hospital. The Social Workers ‘were worth their weight in gold’ for the support I received when needed.

Life took on a completely different persona. Gaelon and his condition changed the soul of everyone who came into contact with him. It changed the whole families lifestyle. It meant much of my mothering was done in hospital, beside his bed.

We lived by a different set of standards after that. We changed the rules.

When I wanted to stay in the childrens hospital and the nursing staff said, “No”, I asked for the sister in charge. When she, too, said, “It is impossible because the parents beds are for out-of-town parents and parents who were breastfeeding.” Mother lion kicked in the staff were TOLD, “I will be staying with or without their help!” (I wasn’t always tactful.) I would visit the Social Work Department and talk with them. Within half an hour they sorted out a room for me to stay in.

My son opened my eyes to a different world. One day, after we had an ice cream from the van he asked, “Can I have another Ice Cream?” I said, “No, you’ve already had one, so you can’t have another one.” Time passed, the gears in the little 5 yo brain were going. He was very quiet for a bit … then asked, “Who made that rule?” I looked at him, … and he looked at me… We could make our own rules. As his mum, my life was about enriching, whatever life he had left. From then on we had as many ice creams as we wanted.

One time, in his teens, when Gaelon was facing another lot of surgery a nurse commented, “Gaelon, you don’t seem to be at all concerned about the surgery?” Gaelon’s simple answer was, “I don’t need to worry, Mum does enough worrying for the both of us.” What else are Mums for if not to take away her childs’ worries.

I learned there was no such thing as ‘can’t’. I learned to get ‘doors’ opened. I learned that inside every mother ‘cat’ lies a ‘lion’ and wow and behold anyone who dares to poke that ‘lion’.

He lived 27 YEARS.

My life has never been the same. My soul wouldn’t have it any other way.

I learned that there are miracles. I learned that mothers cause miracles to happen.

I learned that thoughts, prayers, wishes and ideas are all THINGS. We think of all these things as intangible but they are definitely tangible, when intentions are behind them.

Through Johathan’s On Dying, Mothers, and Fighting for Your Ideas I now understand that sitting, doing nothing but holding my son and praying for days and months and years on end, IS what kept him alive.

Through Gaelon I learned, I can still have as many Ice Creams as I want.
And in his memory … I DO …

Comments

4 Responses to “Living Beyond Expectations”
  1. Jon's Mom says:

    Stephanie, tears streamed down my face as I read your story. It’s no surprise that I can identify with your experience. Life is not fair. But love can take the harshness of that reality and make every living moment sweeter. Your life has changed, as has mine.

    Coming through those battles made me stronger, more passionate about life, and more compassionate toward those unable to help themselves.

    The world doesn’t have enough compassionate people for all the suffering that there is. What has been learned and lived through is a stepping stone to reach out to many others who don’t have the strength or will to fight.

    Keep living Stephanie; keep writing! It makes a difference.

  2. Stephanie says:

    Jon’s Mom? Like in Johnathan Morrow’s mother. WOW

    Dearest Pat,

    Thank you for fighting your fight and WINNING.

    You have an amazing son, who has moved me to tears while reading his post. I thought about his post for days after that. It moved me so much, that it inspired me to express my feeling by writing this post.

    I am honoured that you would respond to mine.

    Gaelon was only 11 months old when he had his first cancer removed. That was even before he was diagnosed. His life expectancy was only about 5 years of age.

    He was very, very sick at times and I thought we would loose him on several occasions. To look death in the eyes and WIN was one of my greatest accomplishments.

    I often felt that the ‘pitfalls’ in our lives are what help build the ‘corner stones’ of our ‘houses’ and make them strong. Pat, the likes of you and I, must have very ‘deep foundations’ to our ‘homes’, deep enough to build ‘sky scrapers’ on them.

    While hanging around the hospital, many a time, there were mothers in turmoil because their child was in surgery with a broken arm, or some such thing. We sat and chatted about their child and what mischief they had gotten into that brought them to that point. I met many a soul-kindred mother this way. Compassion became a way of life. What else could I DO while waiting for my son to come out of surgery, too.

    Even now I am amazed by the people who touch my life. Thank you for BEING a champion for me at this time in my life.

    Your son is more than a wonderful person. He shares his wonderfulness with the world. Where does he get it from, but from you and your family. My hat is off to you and yours. Bless you.

    Cheers
    Stephanie

  3. Cass says:

    Amazing post. Well written, and well done, Gaelon’s Mum. ((hugs))
    .-= Cass´s last blog ..Mars and Venus, I’m telling you. =-.

  4. Stephanie says:

    Hi Cass,

    Thank you.

    Cheers
    Stephanie

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