Sweet Saraya – The Blog » A mum with a camera, keeping her loved ones in the frame.

3 Years On . . .

It is February 2011 and I am surrounded by 12 screaming kids, running from every part of the house with chuppa-chups hanging out of their mouths, and pink cupcake icing smatterings on their chins. They are full to the brim with sugar, so expecting them to sit & play quietly was completely unreasonable. Afterall, this is what kids’ birthday parties are about – having fun and making as much noise as possible.

Three years prior to this, I was in hospital, recovering after being cut open to reveal a tiny, scrawny, dark haired miracle. And she WAS a miracle. It had taken us 5 attempts to finally fall pregnant with a baby that would “stick”. I thought, after falling pregnant so easily with my first 2 children, that I would have no problems this time either. I was wrong. My body had other ideas and fought hard not to go through another pregnancy. Sometimes I think it was my body trying to tell me something, because here I am now with 4 children and I keep wondering how much easier it would have been to stop at only two. Not that I would change a thing.

So why did we try for more children? Well, my eldest son is 7 and he is the most perfect little boy. Perfect in every way. Except for his muscles. You see, he has a disease that is destroying his muscles and, in the process, will end up destroying him (and me) as well. His disease is insidious, unforgiving, relentless, and devastating on both him and the family.

It is also incurable.

Imagine being told that your firstborn baby, the most perfect thing you have ever seen in your life, the baby you have dreamed of and whose future you have planned in fine detail, will not have a future. They will not grow up and meet the love of their life, get married and have kids, or travel the world, and live to be a fine old man with a long lifetime of memories. Imagine being told that you will outlive your child, and all because of a cruel twist of fate.

This is our reality.

When we found out I was pregnant for the first time, we were so excited. We had gotten married so we could start a family of our own. Living in Japan, we knew that we would be bringing our child into an exciting life of travel and opportunities. And when we found out our baby was a boy, we began planning his life. It would consist of rugby, camping trips, surfing some of the best breaks with his dad, snowskiing, hiking, cricket, travelling to exotic locations. It would be a full and exciting life, and he would go to the best school that money could buy. It seemed so simple, and such a sure thing. We never expected that it would end up the way it has. We had no need to worry. Afterall, I had no family history of any sort of genetic diseases or illnesses, and nor did my husband. We just assumed that we would have our baby and our lives would change. For the better.

He was 2 years old when we first heard the words “your son has muscle disease”. We never saw it coming. He had achieved all his developmental milestones, except for crawling (he rolled everywhere). He walked when he was 360 days old. He talked, a little. He fell, a lot. He couldn’t walk up and down stairs, and yet we just thought it was normal. That was, until his sister (12 months younger) could suddenly do things that he couldn’t. And then we started wondering. A quick visit to the local paediatrician in Singapore (where we were now living) resulted in me being told those horrible words. Words I will never ever forget. And on a day I will never forget. It was 1pm on Father’s Day, September 3, 2006. A day forever etched in my memory, and a day I would much rather forget. The doctor told me, with a wry smile, that he will die. He was only 2 years old and he’d been handed a death sentence by an old smiling man in a white coat. I hated that man. And I still do, to this very day. I will never forgive him for shattering my family’s perfect life and our perfect future. Nothing would ever be the same, and I don’t think my husband and I would ever be truly happy again.

Fast forward to the birth of my 3rd child, a gorgeous baby girl. She was breech, the stubborn little thing, so we opted to have her delivered by caesarean as I was not willing to risk her life at all. She was so wanted, and for so many reasons. But the main reason was love. I wanted my son to be surrounded by as much love as possible. He adores his family, and especially his siblings. I also didn’t want my older daughter to end up an “only child” once she lost her beloved best friend and brother. And I also hoped that this baby might one day save the life of her eldest brother. Afterall, she has a special connection to him as her precious cordblood has been banked in the hope that stem cells might one day be part of a very real treatment in helping him combat this horrible disease. We can only hope.

So I guess that’s why I sit here, watching all these children running round on a sugar high, laughing and screaming and causing chaos, and why I’m happy for them to do so. Because it is these moments, when chaos truly ensues, that I can almost forget the future and can just focus on these little miracles, particularly one, and thank the powers that be for giving her to me. Even on those days when she drives me insane, I still remember why she is here and how much we truly wanted her. She is my miracle. Well, she is now one of 4 miracles, but she holds a special place in my heart. She fought so hard to be part of this family that it took 5 possible “vessels” until she found one to bring her into our life. And I am glad. Every single day.

Happy birthday Saraya. I love you. xxx

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