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I've been meaning to write this for some time but I knew that it was going to be a tough task as it’s such a deep and personal reflection. I find that when words find their way to paper they become real and immortal for everyone to see – they cannot be taken back and the admission feels final. It’s time to put down what I have been feeling for months. It’s time to calm my thoughts.
Over a year ago I gave my family some bad news, news that turned our lives upside down. On that day I made everyone promise that we would talk more openly, that this was an opportunity to come together as a family, to rally, to support each other. My dad replied, with tears in his eyes that we would talk more, that they would be there to support us. The trouble is we never really started talking about the news that my daughter has a disability and is a wheelchair user; it has become very much the elephant in the room. The elephant is a permanent resident now and my daughter’s disability is rarely mentioned; when it is, it is always by me and even then the subject is quickly changed.
I don’t know how my parents are feeling or what they are thinking about because they don’t openly talk about their feelings. Sometimes I want to grab them and shake them and shout at them, “This isn’t happening to you, this is happening to my daughter, to my family, to me…” I know that they are angry, that they are struggling to accept their grand-daughter’s disability. Perhaps their acceptance is even harder than ours as they struggle with our pain, too. Unfortunately, and quite ironically, I think that their pain leaves them unable to support us – support that we so very much need. I need them – we need them – but they are not there for us. I tell myself, over and over that they are just unable - and not unwilling – to help: they just don’t know what to do.
I feel isolated and alone and I think that their pain is preventing them from being there for me, for us. I need them to, even for a moment, forget about their pain and remember mine, and consider the needs of my daughter and my family. I need their support to help us to take each day as it comes, to be strong for each other. I don’t want them to solve the impossible, the disability – they can’t do that, no one can - all I am asking for is some support. I want them to look after me and my family and tell us that everything is going to be ok – is that too much to ask of them?
Their love and help could make a difference – surely they realise this? Yes, they can offer what they can – an extra pair of hands, a few hours of baby-sitting, money to lessen the financial burden – but their presence, their words of love and support is much more vital. I need them. We need them but cannot ask for fear of them being unable to give what we so desperately need.
Yes, I am disappointed. Yes, I am angry. My heart aches, too. If I could change anything about this difficult time it would be my parents. It’s not that they don’t love both of my daughters, in fact their love for them is abundant with gifts and giggles; I just wish that they were more open, more willing to help us as a family. However, I realise that parents often do not meet our expectations and sadly, in our case, my daughter’s disability has brought out the worst in my parents.
Again I shout, “This isn’t happening to you, this is happening to my daughter, to my family, to me…” This time, I pause for a moment: “to my family”? Yes, this is happening to my family and I remember that they are my family too. My family, my whole family (my parents included) are struggling with denial, anger, fear and confusion. My parents, just as we are, are grieving for futures lost. My parents are angry at the injustice of their grand-daughter’s disability, but unlike us they do not have our beautiful daughter central to their lives – the very person that can show them that the world is still very much full of joy and happiness despite her disability.
I hope that my parents can find the strength to accept our new normal and join in with our “take each day as it comes” family life. I don’t think that I truly have the energy to reach out to them and mend broken bridges but perhaps that’s just what I have to do. Maybe I have to be the stronger person. However, I’m just not so sure that I can - there is a little quiet voice inside me, asking “but why do I have to?” Because, maybe, I love them and want to help them: just because they don’t love me the way I want them to, the way I am capable of loving my own children, doesn’t mean that they don’t love me with all that they have, with all that they are capable of. Realising this - that, in their own wee way, they love me, that they love us, - will help us all. Or at least I hope it will…
They fuck you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.