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Apr 18

The stone that the builder refused

Posted on Wednesday, April 18, 2007 in Family, Philosophy

When my eldest kid was two months old, they told me he’d be disabled.  They said that the reason he’d been kinda jippy and acting strange was that he had a rare epilepsy disorder called Ohtahara Syndrome.  He’d never go to mainstream school, in fact he’d never talk, or walk, or be the kind of kid I was expecting him to be. Seizures would get worse, and a lot of his life would be spent in hospital. BAM! The information slapped me across the face like a wrecking-ball.

I and his daddy repaired to the pub across the road from the hospital.  We met two prophets disguised as a drunken prison convict and a drunken ex-policeman who helped to stitch up our new scars.  They bought us many pints and told me I was pretty with my red blotchy tear-stained face and snotty nose.  The convict stole my shoe and held it over his head, teasing me like a kid.  The distraction worked a charm.  When I returned (with both shoes) in my drunken discombobulated haze to the cot where this tiny helpless soul lay, I sat wide-eyed until the wee small hours thinking it all over.  That was the worst day of my life. 
He’s five years old now, yes he’s in a wheelchair and he doesn’t talk in any language you’ve heard before, but he doesn’t have seizures anymore, he goes to a better school than I ever went to, and he’s a bright ray of sunshine in everyone’s life who knows him.  We’re well used to things the way they are.  I don’t look at other five year olds anymore and wonder what my kid would be like if he’d been okay.  Going back in time would be futile… I wouldn’t change him for the world.  We’ve met so many amazing people in the last five years, between new friends and helpful organizations, that we would never ordinarily have bumped into.

I wasn’t aware of disability before I had him, wasn’t aware of all the families with such a different take on reality.  My friend noticed the looks of sympathy we got from strangers as we were strolling around one day and got angered.  She felt like shouting at them to point out their ignorance, but I’m used to that.  You’ll get folks with disabilities who are extremely sensitive about their ailment, and will correct you or try to make you feel un-appreciative of the gifts you have, but I think a bit of honesty goes much, much further.  I find it easier to understand that folks are just curious, that they don’t want to make a disabled person feel uncomfortable.  There are others, of course who ooze sympathy on every encounter.  Now this annoys me.  At a recent function, I was accosted many times by people telling me how sorry they were for my troubles, he must be such a burden, how do I cope?  I smile and tell them what they want to hear.  They don’t understand that he isn’t heavy because he’s my son, and it’s a real gift to be able to care for someone like him.

Kids are the bee’s knees when it comes to honesty.  “Why can’t he talk?”, “What’s wrong with him?”, “Can we use him as a goalpost?”… now these are all questions I can handle, and I like to think that perhaps they are gaining experience, and they won’t think disablity is such a weird thing as they grow older.  I have a two year old girl now, who went through a tear-jerking phase of hitting her brother out of frustration that he wouldn’t play with her.  She would collapse in tears and her baleful look would ask me what the problem was.  She seems to understand now though… she leaves toys on his lap, shouts ‘SHUDDUP!’ when he cries, and kisses him when he comes home from school. 

What I’m starting to think of late, is that maybe the prophets I mentioned above weren’t a coincidence.  Maybe I’m looking after the key to a higher power, or a spirit on a different level.  As you’re reading this, unless you’ve met Sean, you probably won’t know what I mean as it’s very hard to describe.  Maybe my mum put it in the best words.  She got right up close to her grandson and whispered;

“Say hello to God for me!”

I tried to write a poem about Seán, but the words won’t form.  So here’s a picture of him instead.

sean.jpg

Bring on the comments

  1. Grannymar says:

    K8

    What a wonderful treasure you have. Some of us go through life and never count our blessings.

    I have stolen that photo for my Desktop, now Sean can smile at me each morning.

    Your piece brought to mind a quotation I came across in the New York Times some years ago. It was from Jack Thomas, a student at a school for autistic teenagers.

    “We don’t have a disease. So we can’t be ‘cured.’ This is just the way we are.”

  2. K8 says:

    Thanks Grannymar! :)

    Some people have reported that Sean’s photos are good luck charms! (Though I’m still waiting for the lotto fairy)

  3. To use a worn cliche, a picture is worth a thousand words.

    I can’t actually think of anything to write, except that people who consider a disabled child to be a burden should be removed from the gene pool. I worked for a month or two with people who had Down’s Syndrome, and while some of them did try my patience at times, their wide-eyed innocence about the world gave this world-weary teenager a new leash of life, and it made me appreciate all my talents more.

    I’d imagine coping at times must be difficult, but it probably makes it all worthwhile in the end. You’ve been blessed with a gift of a child.

    I’m shattered that I can’t close with something meaningful though …

  4. K8 says:

    Ha ha!! I know that frustrating feeling where if you were in an actor in a film you’d sign off with an award winning sentiment… don’t worry, I’m not a huge fan of those sorts of films :)
    “I’m shattered that I can’t close with something meaningful though …” is a meaningful thought to me!

  5. Brianf says:

    The first time I spoke to your Dad he told me about Sean. I said, Oh, I’m sorry to hear that.”. To which he replyed, “Don’t be…..”.
    I understood what he was saying. Two very close friends found out their unborn child had downs syndrome and they made the decision to have the child and let me tell you Julia is a blast to hang out with. I wish I could empathize with you but I can not but I can smile with you.
    We have never met nor even spoken but something in your writing has told me you are not only strong but a deep down good person. This post only cements that feeling. I have spoken with Grandad (if that’s his real name) and if you are related to him then I know where your goodness comes from.
    Someday I hope to meet Sean.

  6. Baino says:

    K8 you’ve written your poem, it just doestn’ rhyme it’s a lovely tribute. My sister is an epileptic. It’s under control but it lives with us every day. You’ve made my morning (which started badly). There isn’t a day goes by that I don’t marvel that I was fortunate enough to have able children, through no intervention on my part I might add, although had they been any different, I couldn’t love them any less. Brian nailed it . . I smile with you.

  7. K8 says:

    Ah thanks lads, I’m glad the post meant something to you :)

  8. Granny says:

    I haven’t seen you in a few days Sean, and I’m getting the withdrawal symptoms again. You make my house a happy place to be in.
    (It’s impossible to pass by Sean without giving him a big smacker of a kiss.)
    I see him thinking
    “Oh no! Here comes my mad old Granny again. I hope she doesn’t sing at me. She is a bit of an embarrassment, my Granny, but I love her bosoms!! All cuddly and warm”

  9. Kate says:

    That’s plenty poetic there. I never much “got” stuff with rhyme or meter, much less blank verse, anyway.

    Thanks for sharing him.

  10. Grandad says:

    I was letting the dust settle on the posts here and [quite frankly] on my own emotions. I had to wipe a wee tear after I read the post. A tear of love, I might add.

    Yes Brian – K8 is my daughter and Sean is my grandson and I will shout that to the world because I love them both so much, and am so proud of them.

    K8 – you’re playing a blinder!

  11. […] Our K8 has written a piece.  Read it. […]

  12. K8, beautiful piece, wonderfully written, amazing son. He is as cute as a button isn’t he !

  13. kav says:

    Never posted on here before, but have lurked now and then. Just wanted to say that that’s a beautiful post K8, and I understand what you mean. It doesn’t matter what they are, because they’re yours.

  14. Deborah says:

    K8 – Beautiful post. I am all teary. My cousin the same age as me is mentally handicapped and we grew up together. She was even a bridesmaid at my wedding. I remember my Mom explaining to me when we were younger that her parents were chosen specially by God, that it was a gift from him to be given a child like that – that he had so much trust, faith and love for you – to put that responsibility in your hands. I’m glad you see it that way too! :-)

  15. K8 says:

    Thanks for all your comments!! I’m a happy bunny :)

  16. Grandad says:

    D’you know, K8? You, Sean, Puppychild, The Accidental Terrorist, Granny and I are a very lucky bunch!!

    Poor Puppychild. She must be feeling a bit left out of all this. You’ll have to write about her sometime.

  17. K8, this is a very touching,heartfelt, and beautiful piece. Children, they are the luminance of the world.

  18. Blogs That I Read…

    […] This blog is always a nice read, and a given favorite in your feed reader […]…

  19. […] Our K8 also wrote about him. […]

  20. […] that I’d forgotten about.  For all o’ you non-Celeb freaks, this is Delta Goodrum, my young ‘fla, and Brian McFadden, taken a year or two […]

  21. […] have it, I used the winnings of the last two crashes to buy our present specially-adapted car for Sean and his wheelchair, so that worked out pretty […]

  22. […] Laughing boy’s room is a makeshift adaptation… we divided the kitchen in half with a partition, and made the extra space into his bedroom.  There is a small window cut into the partition that looks into the kitchen, and a small shelf which I use to make up kiddo’s meds.  I was standing here at this shelf, with puppychild to my left, playing on the floor.  Laughing boy was giggling in his bed behind me.  This was only a few moments after my wendy-house shock, so I was nervously humming ‘La Bamba’ to regain focus. […]

  23. […] Laughingboy would also have to play himself (unless there is one extremely talented 7 year old out there?), but his story would be amazing on film if he had a voice-over… an inner monologue maybe.  I crave a voice-over of his inner-monologue in real life more than anything else in this world, and I reckon Daniel Day Lewis is best for that part.  No, I’m not taking the piss, My Left Foot is pure coincidence I swear.  That lad can act. […]

  24. unstranger says:

    Jesus K8, when you write this stuff you rip my heart out.

  25. K8 says:

    Much appreciated!! But… sorry about that.

  26. yeah i was just reading a past blog of your and sean sounds like little tresure i love seeing his happy little smiley face.

  27. K8 says:

    Thanks Vicky!! I hate seeing his dodgy haircuts… I really must go on a course or something, the poor kid must be mortified with his mammie’s trimming efforts.

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