Saturday, 20 August 2011

3 years down. . .

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

Sunday, 17 July 2011

Where I am at.

I am so angry these days.

And when I'm not angry, I'm sad. Or maybe that should that read "when I'm not sad, I'm angry". Either way, both go hand in hand with the other.

My son has Duchenne, and that in itself is enough to make me sad & angry for a lifetime. An entire lifetime. When we first found out, 5 short years ago, everyone was shocked and saddened for us. Some even offered to hop on an airplane and fly to Singapore, to be with us and provide comfort & support. Most of our friends sent condolence emails or called to say "I'm sorry". And there were some friends we never even heard from, some who were supposedly "good" friends. Needless to say, we no longer consider them friends.

Now, if a friend receives bad news, such as their child being handed a death sentence, there are certain things you should think twice about saying, especially if the parents are in no way religious. These include "God does this to test us", or "There is a reason why God has given your son this disease", or even "God gives special children to special parents". Seriously? Who do people say something like this to a person who doesn't believe in God? Why would a supposedly good God "test" his people? What kind of reason can anyone think of why he'd make a child LIVE with a terrible disease? And as for the comment about giving a "special child" to good parents, well that's a load of BS. What about all the poor orphans living in Romania or Malawi, or the children who are abandoned by their parents because they have a disability and the parents don't want to deal with it? I'm sorry, but if  God does exist then he's a complete arsehole! Apologies to all my "believer" friends, but that's how I feel. To give innocent children a terrible disease like Duchenne, to make beautiful infants and children go through chemo and bone-marrow transplants to beat cancer, to be born with alert minds but bodies that don't work, or to inflict Autism on them and deny them the ability to communicate or show real affection to the people who love them the most. A nice, caring God would not do that. The only real explanation is that life is cruel, life is random, and life is unfair. So please, spare the religious platitudes and just give your grieving friend a big hug, and even let them cry in your arms. Nothing more, nothing less. Just let them know that you are there and that you care.

A few months ago, my (now ex) sister told me that I deserve every bad thing that has ever happened to me, or will happen to me. Now, perhaps this was spoken in anger, but for her to say something like this when she knows how hard it has been for us to come to terms with James’s disease and the difficult issues we have had to tackle and the decisions we have had to make is just evil. I know for a fact that I would never ever wish this upon even my worst enemy. And yet here I have my sister telling me I deserve it. Whoa! Bye-bye sister! For my very own mother to then tell me to “get over it” when I told them about the comment, well, it didn’t go down too well. I’m sorry, but I will never “get over it”. People just don’t get it, do they? And you hope against hell that at least your own family would understand, or try to.

There are those who are also going through a rough time with their kids, those whose kids have chronic illnesses, and they get it. They understand the fragility of our minds and emotions, they think about what they say BEFORE they say it, and they know exactly what to say in those moments of utter despair. They are our support nets, they catch us when we fall and they help us pick ourselves up off the ground and learn to live again, and we do the same for them. They remind us to keep breathing, because sometimes it all becomes so overwhelming that the involuntary action of breathing actually becomes anything but involuntary, and stop doing it. They remind us to “breathe in, breathe out, breathe in, . . . “. They are part of an exclusive club, a club that has tough entry requirements, a club that normal people will never be a part of.

And then there’s everyone else. The friends and family who try to support, try to comfort, try to sympathise. They do the best they can, they really do try. But these are the people we tend to get upset with most. And then, when we get upset because of something thoughtless they have said or done, we are the ones who are made to feel bad. What so many people seem to forget is, whilst they were shocked and upset when they first heard the news about our child, their lives have continued to move on. Our lives, on the other hand, have stopped. Now, we find ourselves relating to events as “before *disease*” or “after *disease*”. And I guess that’s what makes me so angry. Our lives are still on hold, things haven’t changed for us, we are still grieving, but everyone else’s lives have been able to move on. It’s like people expect us to have “dealt with it” by now. Well here’s a newsflash – we will never deal with it, and we will never be able to move on and live normal lives. We will try to make our lives full of memories, try to show our children as much as possible to give them a lifetime of experiences, and we will shower them with more love than normally possible, but we will never be able to move on, and our lives will never be normal. We are probably some of the angriest people on this planet, so please forgive us if we get upset by simple flippant remarks. Sometimes, it’s the smallest thing that sends us over the edge. It’s just how our mind works. I will never “get over it”. Ever. For such a term to be thrown at me is completely insensitive. It cannot be trivialised, it cannot be compared. If you were in my shoes, you would understand. But you aren’t, so you don’t. Simple.

So please forgive me if I seem angry or sad. I want to be happy and carefree, I would give anything to be truly happy and carefree, but it just isn’t going to happen. Life sux, and I am doing my absolute best to “deal with the hand I’ve been dealt”. But please bear with me, with my angry outbursts or my tears, because that’s part of who I am these days. And if you were in my shoes, you would understand.

Friday, 18 February 2011

My first ever blog.

I'm new to this.

I'm 39 years old and yet this is the first time I've ever blogged.

You may call me a "late blogger", but I prefer the term "lazy". I've been wanting to do this for what seems like forever, but I kept coming up with excuses for why I couldn't, rather than understanding the reasons for why I should.

So where do I begin? I guess the obvious starting point is my name. I'm Sharyn. Yes, that's right, it's Sharyn with a "y". My mum liked names with the letter "y". Hence why I'm Sharyn and my sister is Jasmyn (with a "y"). It's just some funny little quirky thing she has, and it seems to have rubbed off on me. I have 4 children, 2 boys and 2 girls. My boys have nice traditional names, James and Patrick. However, and this is where my mum's "y" thingy has rubbed off, my girls are called Charlyse and Saraya. We made up their names. At least, we THOUGHT we made up their names. We'd never seen them written down anywhere else, at least not until after we'd named them. But not to worry, at least I know their names will never be in the Top 100 Most Popular Names lists.

My children are Australian, and yet none of them were born here or had even lived here until 9 months ago. You see, we had the fantastic experience of being Expats for 9 years. We did 4 years in Tokyo, 4 years in Singapore, and 18 months in London. James was born in Tokyo, my girls were born in Singapore, and Paddy is our little Pom. Actually, Paddy really is a Pom, as well as Australian. I guess that doubles his chances of countries he can play rugby for, but in all seriousness he will be good enough for Australia. No pressure on the kid, I just know he will be.

It's tough coming back to reality after living the expat life. Really hard. For starters, we had a live-in maid in Singapore and London. She made life so much easier for all of us, and was brilliant with my children (and anyone else's kids). Having her live with us meant I could also get some much-needed time to myself, time I used to spend sitting in a coffee shop with other friends having "time out", doing what we call "tai tai". Beauty spa after breakfast, champagne for lunch, dinner on the 31st floor of an international hotel. Okay, I didn't live THAT sort of expat lifestyle, but I knew many who did.

We also had an awesome social life. The thing with Singapore expats is that they are all in the same boat. They all move to a country where they have no family, and usually no friends. So they grab every chance of friendship that comes their way. Many of these friendships often fade into oblivion. Expat friendships can be both transient and materialistic, but occasionally you do meet a person who you click with and they end up life long friends. I have a few of those, girls I will be friends with forever. We may not talk as much as we used to, but when we do it's like picking up a conversation from yesterday. That's special.

I miss those days, for every possible selfish reason I can think of. But it was not real life. This is real life. Here in Australia. With no maid and no expat friends. Real life is busy and stressful and demanding and surprisingly lonely, with almost no time for myself. And yet I am strangely happier than I was as an expat. Do I need my head read? All I know is that life IS hard, life is busy, and life can be lonely, even when surrounded by friends and family. But for me, being back in Australia, the country I love most in this world, and having my beautiful family with me (who, granted, drive me completely bonkers much of the time), I know I am going to be happiest here. I'm not quite there yet, but I will be. You'll see.