Hope stories

Looking for inspiration? Take a look at Mike’s story of hope.

By the end of 2006 I felt my life was in pretty good order. I had a beautiful little daughter Laurel who had jumped all the hurdles of good health. While I know I am biased it has to be said that she was “up the front of the bus” when it came to intelligence. My wife Vanessa was pregnant with our second child, we had recently moved into our new house in the Brisbane suburb of Manly West and to me it felt that this was what life was supposed to be about. In 2006 I was the Rooms Division Manager at an awarding wining Corporate Hotel. We were constantly exceeding expectations within the Hotel chain, I really felt good about going to work each day; Overall life was great and to be honest I could not have asked for anything more.

Perhaps it was a case of naivety or maybe being too casual on the subject of child birth but I must admit I did not understand the entire process. I just assumed that everything would work out! In hindsight maybe I should have spent some time reading the pregnancy books like my wife had asked me to do on several occasions, because when it came to the finer details of “the miracle of creation” I did not have a great understanding. Sure I knew the sperm and egg stuff but as to how many chromosomes we are suppose to have, and what would happen if the count was incorrect I had no idea. Throughout my life everything had just fallen into place so why would the birth of our second child be any different? To be honest the main thing I was expecting from our twelve week Nuchal Skin Fold Test was a morning off work and everything else would be a mere formality.

I cannot remember a lot of what was said on that morning in the Redlands clinic however I do remember the words “Down Syndrome” and “one in three chance”. The mood in the room turned very tense and we would not know if our child would have a disability for another 3 weeks. I can also recall sitting outside a coffee shop after the appointment trying to put a confident show on for my wife, telling her how many times I had put my money on a one in three chance only come up empty! The odds were still in our favour. However just below the surface I had a terrible sense of dread.

For three weeks we waited for the results and I did my best to portray that everything was fine by announcing “we had nothing to worry about” and “we would play whatever hand we were dealt”. However internally fear of the unknown kept eating away at my external confidence. I must admit that my knowledge of Down Syndrome did not extend any further than growing up seeing the people from the Northgate Sheltered Workshop on the train while going to school. They were all over weight, waddled more than walked, wore thick glasses, dressed badly and sounded slow and simple. Worst of all they were teased and laughed at by ignorant teenagers from the other schools. I remember thinking at the time how cruel it was but dismissed it as something that would never affect me. Now those images were coming back to haunt me and I was frightened. Was this going to be my child?

I think it was just after lunch on a Thursday when the phone rang and a distraught Vanessa asked me to come home. The waiting was over and the reality had begun, our child had been diagnosed with Down Syndrome. We were devastated! Why is it that men feel this compulsion to carry all the responsibility and have the misguided belief that they alone have to hold the family together in the hour of need? I felt I had to be like the General of an army in the old war movies, standing tall on the hill watching the battle play out in front of them. All the time remaining calm, emotionless and composed as chaos unfolds around him. This was my duty as the male in the household and for the good of the family I felt I could not let my emotions out because if I did I was being weak. When I look that these words now I think “what a load rubbish!!!!” This charade may work well in the old war movies but in reality I was not helping anyone. I became distant and impatient with my wife who was struggling with the news. I was also hurting myself by ignoring my inner feelings. However hindsight is a wonderful thing. During this emotional period I felt that bottling everything up and not speaking about the grief and fear I was feeling was what I had to do. I even stuck a note on my work computer with the words “YOU MUST BE STRONG!!!!”

At times during that first month when I was alone in my office my eyes would “well up” with tears as imagines of the kids I had seen on the train and thoughts of my child’s lost opportunities filled my head. I would then repeat my mantra over and over again until I had buried the emotion that was trying to escape. For good or for bad none of us have a crystal ball to know what the future holds. If I knew then what I know now I would have done things very differently. I now know it is ok for a man to cry and accept how he feels, it is not easy but it is not weak to be honest with yourself. In fact, it is a true sign of strength. I also know now that the family would not have gone to pieces if I had showed how I really felt, maybe we could have handled the news of our child’s disability as a family instead of as individuals; not really understanding how the other person was coping. For this I am truly sorry. Finally, I now have the knowledge that while I was hurting at the time the end result by far outweighs the immediate pain.

It was not until 12 May 2007 that the “emotional genie” finally escaped from the bottle. Compared to the birth of our first child Laurel the birth of our new son Xavier was a “walk in the park.” He was born just after mid night on the morning of 12 May 2007 and as I held him and looked into his eyes for the first time I could not help but feel that he did not look right. That it was really obvious he had Down Syndrome! I did not feel that same euphoria I felt with the birth of Laurel. As with my daughter I whispered to him the same promise that I would always be there for him and see him through, but inside I could not help but to feel empty. Then as with the previous six months I squashed my feelings back in the bottle and tried not to let my emptiness show.

The first day after the birth of any child is extremely busy as you operate on next to no sleep, run to and from the hospital and tell everyone about the new arrival. That evening at the hospital with my mother and grandmother, who had dementia, we discovered that Xavier had failed his hearing test. While these tests are in no way conclusive and would later prove to be incorrect they did not help our emotional state.

On the way home from the hospital I had to listen to my grandmother ask what his name was every five minutes and my mother who meant well, telling me about the people she knew who had children with disabilities and how many people in her church parish were offering prayers. Unfortunately the way I was feeling I did not want to talk to anyone and just wanted to be by myself. The constant talk in the car was pushing me over the edge. Finally, once home at the dinner table with the relatives I hit the wall.

Trying to keep it together I excused myself from the table and went out onto the balcony where six months worth of emotion poured out. The reality that my child had a disability and would be different had finally hit home. How long I sat their sobbing I do not know, I just remember my mother coming out and telling me to have a good cry and my grandmother coming out and asking what his name was. That night in bed I shed a few more tears before drifting off to sleep, ending the first day of my new son’s life.

Looking back now I feel that moment on the balcony was the turning point. The dam had burst; releasing all my emotional anxieties and sadness with it. The next morning I woke up feeling like a weight had been lifted. Since that night I have never felt empty about Xavier again and see him as the most amazing little boy in the world. In saying this must admit that I sometimes have a tinge of sadness when I see that he is the oldest in the swimming class or when I read his low results on the physiotherapy report. However any sadness is quickly erased with love and warmth when I hear the words “there’s daddy” followed by a huge hug. I have accepted who he is would not change anything about him. My son is not Down Syndrome he is Xavier.

In the three years that Xavier has been with us he has been adorable but at the same time a challenge. He has not been a challenge because he has Down Syndrome but because he is a little boy who likes to push the envelope with his Mum and Dad and torment his big sister. When I tell people he has Down Syndrome I often smile when I am told “how loving these kids are.” Naturally I agree but I also take a few minutes to set the record straight and assure them that being naughty comes just a naturally to Xavier as any other child. He is an adorable and loving child but he is also a little boy who has temper tantrums and knows how to press his parent’s buttons.

I recently had a work colleague say to me that it must be hard having a child with Down Syndrome. My answer to this comment was that I was the luckiest man in the world. While my reply may sound like a cliché it was proved beyond doubt recently when Xavier spent a couple of nights in the Mater Children’s Hospital. As I sat on his bed watching the Wiggles with my little boy I took a few minutes to look around the ward. Opposite us was a father and son who been in hospital with problems for the last week, with no end in sight. Around the bed of a little girl next to us was a hive of activity and concern as alarms were beeping and hospital staff were talking very seriously about her situation. Her mother had given me a smile when I saw her that morning and you could tell she had a lot on her mind. As I scanned the room I felt Xavier put his hand on my leg and noticed him give me a quick glance and smile. Maybe I am reading too much into it but the timing of it almost felt like in his own way he was saying “don’t worry about it dad, we’re sweet.” This moment reminded me that while our son may have a disability we are extremely fortunate.

Like any parent, not a day goes by when I do not worry about my children’s future. There is no question that at times it will be difficult. Life does not always go to plan and there will be bumps along the way. However I also know that by staying positive with the right attitude life can be an amazingly rewarding and wonderful adventure. If we always remember to stick together as the loving and supportive family we are I know we will overcome any obstacle which confronts us. I would not change the little boy we were delivered for anything in the world. We have been truly blessed.

What’s your hope story?