Deborah posted this link on her facebook page a few days ago and when I read it I knew way too well why she did it… – What I Would Tell You.
I was transported to that awful week when our world collapsed, the place became real here in my living room, I could even smell the hospital that prides itself of not smelling like a hospital – I was the woman looking at Julie while she comforted her daughter – I was again the mother that came outside and thought that I would rather have been told that the world was ending for everyone.
Julie describes the turning point in our lives, as parents, as a couple, as human beings as it actually happened. It was the moment when we realised that life as we knew it was already behind us. And even if it all changed, even if a miracle happened and suddenly our children were no longer ill or had severe disabilities – parents like us, the Alfords, Julie and her husband and many others, would never be able to go back to that same previous reality – we learn to live, to feel, to love and to survive all over again.
There was another article on Julie’s blog that caught my attention ‘To Say or Not To Say” - here again I know that I have found another mother in a very similar boat to mine. Although it has only been a few months since our daughter has been diagnosed we too have heard all those lines. And we too have politely smiled and used our new found knowledge and dismissed them as yet another ‘one of those comments’. In reality most of the time I would just like to turn to the person and say – ‘Oh, so that would be a satisfactory explanation if it happened to you, would it?’.
But I don’t… not out of politeness but out of understanding that actually this person will never ever see the world the way I see it now – and I would give anything to never have had to enter this world if it meant that my daughter was healthy but I must say that this knowledge and perspective is one of the few positives of the situation.
I too have learnt more in the past 7 months that I had in my entire life. I have learnt not to take anything for granted, to appreciate the day-to-day, I am truly grateful for all the good things that we have even the tiniest details. I pay attention to what is important and easily discard what is petty and unimportant. I look around me and others and see everything a lot clearer and I wish I had always been able to see the world this way but I guess this is what my daughter is teaching me.
When you have a child that is different from others it is complicated, it’s hard to grasp, it’s hard work, it’s like living in another planet, particularly when you are in planet ‘normal’. We find ourselves debating about being sensitive or oversensitive with comments and attitudes that people have and we always discard them as ‘another one of those comments’. But sometimes we do just want to believe that we have this right! It’s as simple as the ‘fat’ and ‘slim’ comment – no one would ever turn to a fat person and say ‘you are fat’ (that is just rude!) but it’s ok to turn to a slim person and say ‘you are so skinny’ – well it’s not, it’s just as rude as it is a judgement on their weight! Same happens with children I would not turn to someone and say ‘your child is ugly, are you trying for another one?’ and if we think clearly being ugly is a lot less serious than having a serious condition, so why make the comment?
But this too is part of our new reality, to be the bigger person, to be kind, to be understanding, to dismiss those that ‘see’ less than we do.
There is no recipe for happiness but some clearly have easier ingredients than others… we have to be more creative, we have to work harder, we have to be more resilient and we do it everyday.
Our love for our children is just as unconditional and everlasting as any other parent feels for their child and yet I have yet to find a parent of a child with special needs who complains about their child… our planet is different, and despite all its hardships it’s a place where we feel privileged to have our children every single second of their lives!