Am I being too positive?

Back when I was a student my middle was a dark place of pessimistic nihilism shrouded in impenetrable angst. Life was devoid of meaning, and always would be. Just to make sure that the fact wasn’t lost on people, I wore a very long, black coat that had a velvet collar. That collar was a little bit ticklish, but on the whole it was a small comfort that I could always turn to as I wandered through those late teenage years of unspeakable weltschmerz and uncertainty.

Somewhere along the way the angst got forgotten. I think that the bank’s relentless requests for me to focus on my overdraft and concentrate on making it an underdraft somehow removed much of my world pain. The Smiths split too. Morrissey got all stylish and The Cure seemed happier somehow. By ’92 they’d be doing this. Everybody was either emigrating or getting a job at home and I just couldn’t keep the dark moodiness going on my own. You need time for that kinda thing anyway.

But change is the only constant, right? And the last twenty years have seen plenty of it. Ups, downs, sidewayses… Mostly though with sunny side up. I saw Leonard Cohen in June this year, and he was sublime. I knew he’d be damn funny too when early on in the gig he said he’d tried lots of different religions, ‘but cheerfulness kept breaking through.’

And that expression got me to thinking. Cheerfulness keeps breaking through with me too, but of late I’m sensing that it can cause upset to others. I’ve been dealt some lucky cards in my time. I’ve gotten some real jokers too. Now I’m wondering, is my natural proclivity for seeing the positive resented by others?

I was involved in a group discussion recently where someone was having a hard time with themselves and their expectations of and hopes for their DS child. Perfectly normal on any given day. My commentary, as is often the case with me, was upbeat and positive. Another voice in the discussion said words to the effect that if you don’t have regrets for your child with DS then you’re not progressing.

The comment stung me at that moment. I personalised it because, in the eight months or so that Jacob has been with us, I did not ever wish that he didn’t have Down syndrome. I had become immediately immersed in the special needs of my boy, but the thoughts of him not having DS, or the idea of wishing there was a cure, never entered my mind.

With that one little comment, I felt like I’d run into that Wile E. Coyote fake tunnel painted onto the cliff face.

Does this make me a bad parent, not wishing for better for my child? It seems so, in a courtroom drama sense at least.

Prosecuting lawyer adopts chummy elbow-on-bench pose as he addresses the jury.

‘Now ladies and gentlemen, are these the actions of a caring father, a father working towards the betterment of his dreadfully disabled son? No they are not, ladies and gentlemen. No they most certainly. Are. Not.’

Open and shut. Let’s all go home. But hold on a minute. Hold on there a minute. Just hold on a minute. I’m here a wee while. I’m beginning to know myself. I’m not Captain Hip Hip Hooray, but on the whole I am a cheerful guy. Glass half full of lemonade made from the lemons, yeah? Jacob came as he is. I took him as he was. There was no more to it. His day has a slightly different structure now than his brothers did at his age, but once the physio, slower feeding and sign language etc have been factored in – and even as they are BEING factored in – I do not see the difference. Occasionally it is brought home to me. Like when I see his cousin, who is slightly younger, easily surpassing him with milestones. Or when he has a particularly square-jawed downsie look. But I cannot imagine ‘fixing’ him.

I have been chided once or twice by she who is nearest and dearest to me about my optimism. She’s right, because sometimes it is inappropriate. On more than one occasion she has said that ‘If it was up to him, EVERYBODY would have a kid with Downs.’ Not PC enough for you? Probably not. But on those occasions, when my heart is overcome with the straightforward, no-strings-attached love that funnels between him and me, I wish this for everyone. Yes I do. Maybe I don’t know enough about the future and its trials. Maybe I’m a naive fool. But right now I do not care that his Leaving Cert results will not matter in quite the same way as mine did, or that his career trajectory will not be stellar in the Wall Street sense. I do not care. And if I am lucky I will not care later either. His life will have its own worries. Whose doesn’t, exactly? Much of what he does will be judged on a different scale. As I look back from the (hopefully!) half way mark I wonder whose will be the better quality scale when the final courtroom verdict is in. I’ve seen one or two judges in my time make one or two fool judgement calls.

I’ll deal with the problems of the future when they come to find me.

The judge peers over glasses and under bushy eyebrows to address the jury.

‘Gentlemen and ladies of the jury, you are directed to deliver a verdict in the case of A. Cheerfulidiot. What say ye?’

11 comments on “Am I being too positive?

  1. There is no such thing as being too positive Nick. If you can’t see the positive, you’ll just cry, well I would anyway, as we all know, Boooooys Doooon’t Cryyyyy. Couldn’t agree with you more, if Jacob or Cathal did not have DS, they would not be the same children as they are now, and I wouldn’t change Cathal for the world. Guess that’s unconditional love for you. As I’ve said before, one day at a time, no point in stressing on what “might happen”.

    By the way, I was 12 when the Cure released that song, and I loved it……super happy song….
    “It’s Friday (tomorrow) I’m in love”

  2. Christine says:

    You can never be too positive. There is absolutely nothing wrong in feeling and being positive. You just need to be true to yourself. I have come across many people who can say all of the right things. They can paint you such a beautiful picture of what life can be, but deep down they don’t really believe any of it. Those are the people who should be questioned.

    I don’t agree with the comment about if you don’t regret your child having Ds then you are not progressing. Thinking that you are not being a good parent because you don’t have a problem with Ds is ridiculous. I wish I didn’t have a problem with it, and really I don’t have a problem with the Ds. My problem lies more in society’s acceptance and view of Ds.

    I love my son so much. I think he is perfect, I would not change one thing about who he is today. He is just a baby though; I can’t help but wonder if I’ll feel the same way in the future. As he grows, I want our relationship to grow. I guess a part of me is afraid of the potential cognitive disability. I’m afraid that he will only grow physically, and not cognitively. Selfishly, I want to be able to have conversations with him, have adventures together, know what is in his mind.

    Ok, I’m hijacking your post so I’ll stop and give you my verdict:

    Not Guilty!

    BTW, I was a big Cure and Smiths fan too. Loved the Cure’s album Disintegration–any wonder that I’m brooding so about the future now?

  3. hammie says:

    I was into Midnight Oil WAYYYYYY before they got internationally famous. Search for “The Power and the Passion” on Youtube.
    What the fuh is wrong with looking on the bright side of everything? I think I might have borrowed Imelda’s Taser for that parents meeting Nick. Why not be inspired by another parent’s passion and motivation?
    Downs and Autism happen on A Cellular Level. We cannot change that, so why waste time wishing it?
    But if you stay on top of things and look for the happys (a Boo word) then you will be a better parent. Not just for the hugs and kisses. But for the speech, physio, occupational therapy and feeding programs that you are going to have to learn to provide. By all means have ambitions for your child. But be ambitious for them to be the best version of who they are. With the healthiest body, the most active and engaged mind, surrounded by love and just enough support to make them feel safe, but not smothered if they want to break free. (a bit)
    Nobody has a magic wand in this dimension. But I do have Taser, so ZZZaZup to the Black Dog!

  4. dtoddbell says:

    Fuck PC! My daughter is going on 6 weeks old and her DS was not expected. I struggle, but I’m also finding so much joy. I didn’t expect it, but it’s my salvation every day. Why should I throw such a gift away?
    I have no patience for people who tell others how they should feel. I think most of them are clinging to books and “expert advice” as some sort of life raft. I’d rather find my own way.
    Listen to your heart, brother. It sounds like you have a good one.

  5. Sesame says:

    Old Chinese Proverb: “Better to light a candle than to curse the darkness”

    Not Guilty m’Lord.

    And that’s all I have to say about that.

  6. Elbog says:

    One of the things that hit me like a ton of tapioca, after wallowing in self-pity for nearly a year, was the realization that how I felt didn’t really matter. Emma is who she is, no matter how I feel about her or her condition or meself. I realize that this is the opposite of what you are saying, but that little factoid made a universe of difference to my attitude. I could wallow and piss and moan, and Emma was still going to grow into who she’s going to become. I can make buttons and raise money and get on television and say, “Look at me, I’m Uber-DS-Parent-Advocate/Enabler-Man!”, and Emma’s going to go right on being Emma.
    It meant that I could be myself, again, and I will be, just as soon as I figure it out. I have regrets about both of my kids; it starts with that first big head injury, and moves on to the damage we know occurs when we hear our parent’s voices coming out of our own mouths toward them.
    All that’s to say that no one, particularly no member of our little club, knows how you feel or how you’re supposed to feel. And one more thing – I’m of the opinion that we’re all ‘damaged’, in one way or another – – there’s no one ‘scale’. It’s one of the reasons we need each other so very badly. We worriers need folks like you around, though we’re not likely to admit it.
    Now I’m hearing Cat Steven’s “If you want to sing out, sing out” in my head. Thanks.

  7. Judith says:

    What a wonderful chinese proverb! Sorry but who gives a highlanders shite about PC whos says you cant be positive about your child? There are people out there with little or no interest in their kids you and your good lady are just great parents and those who have problems with your positivity tell them you’ll write a cheque where they can cash in the international bank of fuck off..

    Im an old school goth, never was into moodiness or angst even in my teenage years when I was listening to everything from sisters of mercy to Nick drake and leonard cohen (whom I seen when I was 18) but I still wear all black, egyptian kohl eyes and scare the bejesus out of small kids. Ill never conform to bright colours ao shoppings dead easy pardon the pun!

  8. tom says:

    I’m just getting around to visiting blogs so pardon my lateness. (I brought a bottle of wine to smooth things over.) First, I thoroughly enjoy your writing. As to the content of your post, I was – am – the perpetual brooder. And perfectionist. Not a fun combination.

    It took months for me to come to terms with Ian’s ds. But, as Jeff (elbog) mentioned, it just hit me one day that Ian doesn’t care about it (now); he just wants to live his life. Whew! I don’t have to “fix” him, just enjoy him.

    Look forward to reading more… and am jealous about you seeing Cohen.

  9. Nick McGivney says:

    Tom – the wine was appreciated, and your comment has been taken to heart by more than me. Your jealousy of Cohen has vindicated my entire summer – and it’s been one for the autobiography, I assure you!

    Judith – so glad you dropped in. Keep kicking against the pricks!

    Jeff – am with you 100%, and am fierce glad you know who you are.

    Sesame – if I don’t get a stick of Blackpool rock there’ll be trouble!

    dtoddbell – stay positive, because it’s getting me through times of eff-all positivity. I hope your baby girl is doing well, and you can share each other’s joy for many years to come.

    Hammie – how can we sleep when our beds are burning? Keep up your work. It matters to quite a few folks.

    Christine – I love your honesty, and value your straight advice. Nobody has it easy, and if they say they do they’re lying, but you don’t do that. Thanks for the comment. I’m always listening.

    Cathal’s mam – je t’entends toujours. Merci pour le comment. C’est fini – je n’ai plus francais!

  10. Jo says:

    I’m not qualified to comment… but I will anyway.

    I know what they mean about feeling regrets sometimes. If I had had a DS child I would have mourned for the child I’d expected. I think.

    But as the others have pointed out, this situation is not something you can change one way or the other – I think it’s wonderful you don’t want Jacob to be anyone other than who he is.

    Who knows, though, those pangs may creep up on you occasionally somewhere far in the future, when he’s not such a cute little baby any more – or never! I hope it’s the latter.

    My favourite cartoon is the headline ‘Optimist Drowns in Bath Half Full.’

    So has this new Cure album been released yet?

  11. Nick McGivney says:

    Jo, I think everyone’s qualified to comment. I don’t mean that in a we-are-the-world bleugh way either. The further I go on, the more I realise that nobody escapes the slings and arrows. I used to think some did, but by now I don’t know any. I’m also slowly getting the fact that a huge amount of people need to grieve for undelivered expectations or different results. That’s fine. I know this now and I did not before.
    Thanks for the comment mama.

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