People always ask around anniversaries, “do you remember what you were doing when Elvis died, or John Lennon was shot or man walked on the moon?” Well January 14th 1992 was that day for me.
It was the day that was the death of hopes and dreams that I had. It’s the day that I could tell you how every breath struggled from my tightened chest. The day my heart broke into a million pieces. The day my life changed forever!
To understand this day I need to take you back a couple of months. It was around October 1991. Ryan my eldest child was about to turn 3. A couple of friends were over with their children to play with Ryan and Jade my youngest.
We had a huge undercover area where the kids were playing with bikes and other toys. Sitting there I noticed that Ryan couldn’t do some of the things the other kids could. He couldn’t peddle a bike and he couldn’t jump like they were. It wasn’t anything I worried too much about but thought I would mention it at my next baby clinic visit.
The next week I went to the baby clinic for Ryan’s 3-year check. I told Wendy this health nurse about my concerns. She asked Ryan to do a couple of things then suggested that maybe seeing their physio would be good to help get some exercises to help Ryan catch up.
I got an appointment for the physio in early January. She got Ryan to do some things like jump, stand up from sitting on the ground and a couple of other things. She then said she would need to call my GP. It was at this stage that I thought “there is something seriously wrong”.
She came back to find me in tears of worry. She told me my GP had said she wasn’t’ to upset me since I was 7 months pregnant but that I was to see him after the baby was born.
As anyone who is a mother could tell you, this was NOT going to happen. I got an appointment with him the next week. He also got Ryan to do a couple of things like standing up from sitting etc. He gave me a new referral to my pediatrician saying to see him after I had the baby, as there were some muscle problems with Ryan but nothing to worry about at the moment.
Now I have fantastic relationships with all the doctors we have. I also knew that something was not right and my gut was telling me this was serious. I went straight home and rang for appointment. My pediatrician was away but the secretary said I could see another who was filling in for him. I told her yes and was lucky enough to get an appointment for the very next afternoon at 5pm. 14th January 1992.
That night I scoured through the medical books I had at home. I knew, just knew it was something serious, but what? There were so many things that it could be. After a restless night I rang my mother and asked her to come down to watch Jade while we went to the pediatrician.
At 5pm we were in his office. Again he got Ryan to do some things especially the getting up off the floor one. He then told us we were to go straight to QML and have a blood test down as he thought Ryan had muscular dystrophy. I knew that this was one I had read about but couldn’t recall the exact details of it.
We had the blood test done and went home to wait. The first thing I did was reread about Muscular Dystrophy. I hated what I read and wanted to rip the page to pieces. My son couldn’t have this!! It said he would die!!!
I was careful not to let onto anyone else in the house what I had read. I thought maybe they were wrong. I fought the feeling I had deep inside me telling me they weren’t. My child was fine; this was all a huge mistake.
Just after 7pm that night a car pulled up at our house. As soon as I saw our GP emerge I knew. I took one look at his face when he arrived and ran into the backyard. I had tears streaming down my face, asking over and over again why. I stayed there until I was too exhausted to cry any more.
When I went back inside Peter and our GP were sitting at our dining room table crying. My heart broke all over again. Here was my ever strong and supportive husband, my rock throughout the years falling apart and needing me for support.
We were both given some sedatives to help us through the night. Before taking them though, Peter and I went for a drive just to get away. I had given up smoking while pregnant but stopped and bought a packet, which was smoked that night.
So this was the day that our dreams of seeing our son running around playing sport, driving a car and becoming an old man died. This is the day that would change our lives forever more. The day my music died!
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