Harry Alexander John Goldsmith
HARRY ALEXANDER JOHN GOLDSMITH Monday 19th June 2006 .... a day that changed our lives forever. The day we were told our son Harry had SMA type 1. Harry was only 10 weeks old when the pediatrician told us the soul destroying news. I thought at the time, what a ridiculous thing for him to be telling my husband and I, that we would lose our precious son before he was even a year old. I can remember looking at him and thinking how could he have sat there so calmly. Surely this was all just a bad dream and yet even now we still haven't woken up from that nightmare.
Our beautiful Harry was born April 4th, a bonny 9lb 1oz, a very special brother for Thomas, Emily and Grace. I had been induced with my three previous pregnancies and so when I went into labour on my own it was such a surprise. He made quite an impression on his siblings, very surprised to have a new baby brother on their return home from school! And so our family was perfect and complete. They were busy weeks that followed, it was a full and noisy home. Harry was very placid from day one - preferring his sleep to my milk and surprising everyone with his easy going nature. Our plunket nurse was the first person to notice little things in Harry. She was concerned with his lack of strength and asked me to mention it to our family doctor when Harry was due for his first inoculation. At about 8 weeks I took Harry to this appointment and the doctor thought it best that she referred me to a pediatrician. Alarm bells were ringing, I felt terrified that was something terribly wrong.
Our appointment was not for two weeks and although my husband and I were concerned, I think we both thought that it was something we could fix. Still a two week wait was two weeks too long and we managed to get into a private clinic the next day. I turned off when I'd heard enough and strapped Harry into his car seat and ran down the stairs to the car park two at a time. I don't even remember how we got home. How on earth could we tell the children? We had so many questions. We were to see the specialist and nurse in Christchurch Public Hospital the next morning. There was so much we didn't understand and just too much to take in, it was one of the longest nights. And so after our meeting the next day, we tried to make sense of everything, we had heard the worst and there was still more to digest. We just wanted to take Harry home and have everything back to normal. The next few weeks and months that followed were such an emotional roller coaster. We made the decision not to tell his big brother and sisters and we are so very glad we didn't, we couldn't bear to break their little hearts .. how could they have ever understood, we didn't even understand ourselves. We kept everything as normal as we could and enjoyed and treasured every minute we had together. I found it so hard to leave the house for those first few weeks, but it didn't take long for me to see that it wasn't going to change anything hiding away from the world.
It was such a surreal feeling, its almost like you're living in a parallel world to everyone else. One of the most frustrating things is watching others around you just getting on with their lives and ours had been turned upside down. It was so unsettling to have strangers in the house, the physios, support workers etc, it never rang true and probably one of the hardest things is to accept what is happening. I don't think even now we do.
