Wills, won’ts and don’t-want-tos:Jacob and the future

ostrichSome people become paralysed by overriding concerns. With me, alas, concerns have never truly been able to override whatever it is that I’d rather be thinking about. I have the remarkable ability to face important issues and promptly park them on the least visited floor of my mental multi-storey. Often I lose the ticket altogether and have no idea what it was I parked, let alone where. A Fiat 500? A unicycle? Impending total kidney failure? Taxi!

Some might consider this a good thing. Others might view it as a fatal character flaw. I don’t know. I’ll think about it later.

In the last week or two however I’ve been caught unawares. Ambushed by thoughts of the long-range future, you could say.  One of these came about when I went to St Michael’s House for an evening’s light entertainment on the subject of making wills and provisions, specifically for children with disabilities. (This has been covered properly by South Dublin Dad last September.)

And just in case the subject matter wasn’t hitting its gothic quota, the Dublin 11 weather obliged as if it was doing a screen test for Wuthering Heights or maybe an Agatha Christie whodunnit. It was an extremely inhospitable, storm-lashed night. Winter-stripped branches lunged at us as we ran across the flooding car park. Rain barrelled down, drenching all and sundry in the dozen steps between their cars and the school assembly hall. Short of a few streaks of lightning and a creaky olde inn sign that read ‘The Last Will & Testament’, the scene was well and truly set for a powercut of an evening’s entertainment.

I expected a dozen people to be there maybe. Not 130 rapt parents in a warm and inviting assembly hall, listening intently to solicitor John Costello from the firm of Eugene F Collins as he gave thoughtful insights on the subject of providing for your disabled children after your death. He was clear, concise and gave excellent and unbiased advice. Legally unbiased, that is, in the sense of looking for your business. He wasn’t. He has other vested interests, both with St Michael’s House and in having an older sibling with disability.

So why did it rattle me? It’s not as if I haven’t thought about life for J after we’re gone. Well, in one soft-spoken piece of advice, Mr Costello said that you couldn’t expect a child’s siblings to be their primary care givers once you’d died.

That was all. Nothing earth-shattering. Unless, like me, you’d constructed a neat little rapid-fire solution for the future (the boys will take care of him) and then stuck it on the back burner of complacency.

You can’t expect a child’s siblings to be their primary care givers once you’ve died.

Simple. And of course, absolutely right bloody on. Jacob won’t be a baby forever, a hardly-any-burden-at-all bundle of joyfulness. He’ll be a grown man, well capable of offending his brothers’ wives’ in-laws. More capable of offending them, possibly, than the next man. I don’t know. How the hell am I supposed to know?

You think I want to be bothered with this? I had it all neatly stacked. The boys will take care of him. Mr Costello very kindly went right ahead and drove the stunt car through my deliciously neat stack of stunt cardboard boxes. You can’t expect a child’s siblings to be their primary care givers once you’ve died. Dammit.

Then last week, as if to reinforce all that, our young man uttered his first word. Aptly enough, it was More. My heart skipped a beat, as you do. He wasn’t asking for more food either. He wanted more Wheels on the Bus. Bouncing on my knee was ending too quickly, he felt obliged to tell me. Well we could sort that out. He ended up close to puking by the time the Wheels finally coasted to a stop. But he did keep asking for mah. So it was his fault really.

And now I have to think some mah for myself. Mostly around the area of a Discretionary Trust. Because, according to the man who pulled my head out of the sand, that’s the thing to do for someone with a disability of the learning type. It removes the issue of inheritance tax, it won’t affect the individual’s disability allowance the way ordinary inheritance would and it’s not means tested. And I can’t expect Jacob’s brothers, who God willing will have long lives and trajectories uniquely their own, to be responsible for him all his life. That would be the easy way out.ostrich-2

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13 comments on “Wills, won’ts and don’t-want-tos:Jacob and the future

  1. Susan Murphy says:

    Delighted to read this, if you don’t mind me printing this out and leaving it on my fridge. Since our man was born a year ago I have had so much of ‘Well your lucky A has 3 older brothers to look after him when your gone’ because it was such a hugh worry for me and I have been saying over and over I don’t want them to have to look after him, I want them to have their own lives and also that thing of their others halves.
    So will leave this out for everyone to read.

  2. NAN P. says:

    First thing first: Jacob is TELLING you what he wants… THAT is great. This little boy will go far, he’s got his priorities right, his first word prove it.

    Second thing: why not think about the will, then draw one up with all the necessary detials, and then… park it away nice and neat? And God willing, if it is drawn up properly, you will NEVER have to remember on which floor you left it.

    I like the photos… where in the name of G. do you find them?

  3. Nick McGivney says:

    Hello and welcome Susan. Just met your little man Adam. Delighted you dropped in.

    Nan P! Yup, just has to get done and forgotten. And re the photos, that’s me at the top, and my uncle Larry is in the bottom one!

  4. I too heard that same harsh reality at the talk…

    I think (and I speak purely for myself you understand) that you have identified the real heart of being a parent of a child with DS

    1) You have a child with DS

    2) You (hopefully) overcome the related health issues (and I dont belittle them believe me)

    3) You start to cope with the situation you are in and start to (hopefully) rise above it and realise you love that child to bits and sure it doesnt matter anyway

    4) You spend the rest of your life doing your best always aware in the back of your mind that you will one day be gone and your mind struggles to deal with that single fact. And there is no way round it, it is a bastard.

  5. Mel says:

    Hi Nick,

    Good idea about the will etc, and hopefully once in place all will be sorted. I hope that although Ben and Emily won’t be primary caregivers, that Luke will be pretty independent, and that they will be involved in his life as siblings should be 🙂

    There is a great programme here on people with disabilities called Attitude, and you can find episodes online at http://www.disabilitytv.com or on http://www.tvnz.co.nz. Well worth a look, and show some great kids, including those with Downs, pursuing independent lives. For Luke, we will be aiming for as much independence as we can. I am also aiming to have the other’s be independent too- but these days it seems a challenge to get them to move out and stay out!

    Anyway 30 degrees here at 10am in sunny New Zealand- I’m off to enjoy the sun!

    PS Such a clever wee man to be bossing you about already 🙂

  6. Elbog says:

    Positively Dickensian – The best of times, the worst of times. How utterly, totally Human to utter one’s first word – *more*. To quote your own Saint Bono, I still haven’t found what I’m looking for. HA!
    I’m still inching toward where you’re heading with this; Emma turns 10 in July. Funny part is, you have to try and decide who gets to deal – hoping that the answer will be revealed to you, somehow.
    Here’s to moving along, acting all growed-up, and getting it done. Maybe Manana – which of course means, ‘not today’.

  7. Janet says:

    Ha, just found your blog, courtesy of a link at India Knight’s blog!

    Heather’s first word was ‘more’, but I blame her therapists, who thought it was a great word to teach her. (Heather will be 20 this year).

  8. Christine says:

    First of all, congrats on the first word. More was John’s first word too.
    Jacob is a boy who knows what he wants–that is a very good thing.

    Now to the hard stuff.

    Soon after John was born, my mother told me that “life would never be easy again”. Not what I wanted to hear; especially since deep down, I feared she was right. I envy those parents who don’t seem to worry about the future.
    i honestly don’t know how they do it.

    I am acutely aware that my cute little guy is, God willing, going to grow into a man. He will physically be an adult, but where he will be mentally or emotionally is still a big unknown. With that comes a whole host of concerns. It seems grossly unfair that my daughters may be the ones that need to handle what may be the hardest part of raising a child with Down syndrome.

    Good for you for taking your head out of the sand and thinking about and preparing for Jacob’s future. Hopefully, all of these concerns will be for nothing, that Jacob will continue to tell you what you wants and will ultimately be the one determining how is life will be led. It is good to be prepared for the alternative though.

    I miss “easy”, but just think of how much more provocative this all is 🙂

  9. Cal says:

    Glad to see you’re back blogging more often now! Tell Jacob he has been missed, ok?
    Also, my first word was “more” and I think I turned out pretty well myself. Although, depending on if you ask my mom or my dad I was either wanting more food or more hugs. I still love both so it is pretty hard to tell which it was…

  10. lisadom says:

    god Nick I envy you hearing the first word before the second birthday! Someone been doing their Hanen? Congestulations to both of you, well all of you including the man himself.
    I also envy you the typical siblings. Yes we emus are just as remiss and park those difficult thoughts. We did have the godparent talk, the real one, not the one involving communion cash and have made an allowance in our insurance policies for the proceeds to go to my sister in order to make taking on the burden of raising our kids financially bearable in the event of our untimely demise. The love seems to be taken care of.
    It is a big ask, to inherit one autistic child is unfortunate; two looks like carelessness; but I am hopeful that other aunties and cousins would share the load. All we and the good people at Zurich can provide is the cash; the rest is up to love.

    It is an important discussion to have; I hope your post prompts the discussion for others.
    xx

  11. Nick McGivney says:

    SDD: I guess it is one of the realities of this situation we share, maybe thrown into sharper focus for us. But in the last three or four years I’m beginning to see a pattern. That quaint old expression, shit happens? I think it’s an equal opportunities employer myself. Doesn’t make things any easier necessarily.

    Mel: thanks for the fantastic links and the positivity. Mostly, of course, thanks for bringing up your terrific weather. I think I can speak for a few of us frostbitten types when I say Who the hell made you Weatherwoman??

    Elbog: manana is where I do all my best thinking. No surprise atthe Spanish coming from a man whose name is really Spanish for Marsh… 🙂

    Janet! So very glad you dropped by, and I hope you will lots more too. You sound like you might have a few tricks up your sleeve for us relative newbies. Welcome welcome welcome, and please come again!

    SW: I’m such a lousy visitor these days, but I promise I’ll be around More soon! Ad tomorrow will be BlogJam day!

    Chris: No two ways about it. We’re more alive for all this extra thinking we’re doing, even if ironically it’s about death, huh? In the long run, it is my humble belief, this life is just the teaser campaign, and our children’s beautiful spirits are what ultimately our own less brilliant ones will have to measure up to. Oops. Got deep there. Sorry, won’t happen again etc etc 🙂

    Cal: You certainly look like you turned out fine, more or less 🙂 (That runaway tractor pic still gets me in the ribs. You weren’t yelling ‘More’ that day for certain!)

    Lisa: None of this adult stuff really suits us, does it? Just a role we’re paying until the real adults come along. Thanks for the generous spirit that is you, Lisa Hammiedom. You are the queen.

  12. Mel says:

    Thanks Nick. Since this comment about my weather woman status I have had 2 weeks of rain. Yes, 2 weeks. In summer. In a drought. It is not even warm. 15 deg today.

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