Special Dads

ImageI 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.

24 thoughts on “Special Dads

  1. Hey Jacq, I love how you take photos! So we are even…. seriously thank you for your kind words, I have always appreciated your encouragement. If we are going to talk about parent awards, I think you and Rod would trump us all.

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  2. Mate, you hit the nail. Got a boy banjo with Spas quad C P and eloquence aside, that nerve is true. Best of luck
    Another “special dad”

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    • Hey Brad…love your description of your son Banjo – looks like an abbreviated real estate add. You forgot the A/C, DH, 3BR OFP, etc….had to laugh. Good luck man…glad there are other men out there doing this journey, it is a wild world. Jay

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  4. Lovely! Thank you for sharing your journey! I have been pondering the barriers of the disabled a bit more of late. I am an ‘able-bodied’ disabled by having a stage iv cancer diagnosis. We are encouraged, I think, to see ourselves as different, better perhaps. It is a very false divide that limits our collective voice. Anyway, I appreciate your efforts.
    warmly, marcy
    http://livinglydying.com/2013/08/09/scapegoating-of-the-disabled-2013/

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    • Hi Marcy, thank you for your comments. I have been looking at your blog and you are one very gifted communicator who is brutally honest. Everyones journey seems worse to someone else, I cannot for a minute imagine what it is like to chronicle a journey with the words ‘terminally ill’ in the sentence – my path all of a sudden seems easy. You sound like a remarkable person.

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  5. Jay, your honesty really touched me. My son has just been diagnosed with a rare genetic disorder and i am still in the initial phases of grieving for the happy carefree life we had, whilst feeling tremendous guilt in also acknowledhing that i didnt sign up for this and if given a choice, i wouldnt… We werent given a choice. My heart aches and i literally feel ill watching other happy carefree families playing with their kids. I am hoping time will help, but right now i am also drowning in the what i dont have.

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    • Wow… I am not sure who has articulated the conflict within more accurately – you or me! Your comment is raw and vulnerable. I completely understand and that ache still ambushes me when I see other families enjoying the simplicity they have been awarded so effortlessly. I guess one thing that helps me is the knowledge that there is a community with people like you and me sharing a journey. I wouldn’t sign up for it either but now we are further down the track, I wouldn’t give it up for anything. And there lies the tension. Thank you for sharing. I wish I had more to offer you – what you are going through may be one of the toughest things someone can experience and I am encouraged that you are able to express yourself so beautifully. It may be your saving grace.

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  7. Hi Jay..You might remember me as the quiet girl who cleaned the Careforce church toilets or the girl that handed you a whole bunch of songs/poems (that now I’m embarrassed that i handed to you) about 15 years ago.
    I’m now 30,married to an amazing christian muso and we are going through our own trial.
    I’m currently 26 weeks and 5 days pregnant with our first child. I need to stay in hospital for pretty much the remainder of the pregnancy I’m told cause it’s high risk. Currently flown emergency RFDS flight to Townsville hospital/Cairns incase of prem-labour. So don’t get to go home for another 2 months or so unfortunately. I love your story and how you said that before you wanted ‘mundane’ but you wouldn’t have appreciated it if you had it. It’s so true. It’s amazing in that in brings a husband and wife so much closer together too and an appreciation of life itself. Just picturing getting to hold my Son in my arms is enough to get me through this whole thing and keeping focused that God will use this for good. I know God has an amazing plan for his life. Many blessings to you and Helena. If it weren’t for you guys i honestly don’t think i would be worship leading today either. Thanks for just being yourselves.
    God Bless
    Heidi Xhafer (meadows)

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    • Hey Heidi, I sure do remember you. I am so glad you are chasing your dream of being a worship leader. Wow faithfully cleaning the loo and now look at you! I hope you are still writing. Take care.

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      • Oh good you do remember. Yes worship leading has been great but taken lots and lots of perseverance and conquering many fears.
        Yes still songwriting and definitely improved since what I gave to you..lol
        It sort of took a step back since I got married just over a year ago but i really want to get back into it. I have my own little music studio at home that i tinker around in. I’m just not so good when it comes to mixing. That is my downfall. Anyhow take care..
        Heidi

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  8. My wife posted your piece on Special Dads on my FB today. I found it very moving. You expressed many of the issues I have grappled with during the 25 years we have raised my handicapped son. The paradox you described has been on my mind many times but I could never quite express it. Thank you for writing it and God bless. Armando

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    • Wow… Talk about being humbled Armando. Thank you for your beautiful words. You are a veteran of 25 years, I am only 10 years down the track with plenty to learn. If we all share with each other we’ll get through and not just survive but enjoy. Take care

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  9. we are family, Jay, hell, you & I are twins from different mothers. I have a Daughter, with Downs & an older son who is autistic. very hard some days & Faith feels broken many late nights, staring at the ceiling. thank u for the post. good to know that at least I am not alone.

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