I have often contemplated if having a special needs kid makes for a special dad. I’d like to think so but the truth is I still burp, need deodorant and annoy my wife, so it is likely that I am ordinary. But maybe that is what makes me special – the fact that I am ordinary.
How dads navigate the path of special needs is a miracle. Now, there is plenty of attention given to mums of special needs and that is very deserving of course. The problem is we dads sometimes disappear into the background and people forget that we hear and see the same things, we will grieve for the rest of our lives, we experienced the loss of a dream, we held our breath many times waiting for a sign of life after the resuscitation of our kid, we also heard the diagnosis, we ponder endlessly about the future, we feel anxiety about how the world will treat our kid, we are frustrated with doctors, wheelchair suppliers and government bureaucracy, we wonder if our marriage will make it and if our relationship will ever be the same and we still wake up in the morning years later, shell shocked, wondering if it is all a bad dream.
I don’t think any dad of a special needs kid would profess a particular uniqueness, but we would describe an enlightenment that we have been awarded because we are on this journey. We know stuff, stuff we never thought would occupy our mind. None of us signed up for it, in fact if given the option I wouldn’t sign up for it again because I am weak – but I would never ever want to live life without my daughter Sunny just the way she is…. Do you see the paradox?
I sometimes see other dads and their kids playing and I feel this ache like a heavy piece of lead has lodged in my heart stopping the blood flow. It isn’t that I am jealous because I love my daughter, it is the constant reminder of what is not. The ‘what I have’ is precious, the ‘what I don’t have’ is simply unbearable.
But when the alarm goes off in the morning the world doesn’t wait and I am forced into the magnetic field that insists life moves on in the same direction despite the ache. I still have to go to work and contribute which feels so odd when my parallel world seems like a different planet. I force myself to engage in incidental conversations in order to embrace the benign clockwork of life despite the sickening feeling of chaos – because I know if I don’t I will drown in myself.
So what does it feel like to be immersed in the normal when there is nothing normal about my life? Bloody weird. It feels like breathing water instead of air.
I want ordinary but I don’t know how to be ordinary anymore, I guess that makes me special. Problem is I didn’t want special, I wanted the mundane but I know myself well enough to know that if I had the privilege of mundane I wouldn’t even know how lucky I was. The irony is, for us to be truly aware of a privileged life, we have to experience the opposite and for our family the ‘opposite experience’ is not rewindable, it is permanent. Grrrrrr…
So I reluctantly embrace the title of ‘special dad’ because being an ordinary dad seems like bliss, and relief from that lead in my blood stream would be nice. As for my daughter, oh God I love her – and I would poo poo this blog entry and dismiss it as blah blah because no philosophical evaluation will ever change what it feels like to hold my daughter Sunny and kiss her cheeks.