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

Where I’m 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.


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