Running…with red eyes.

3:30am.  And up.  (Nothing wide-eyed and bushy tailed here.  You have a problem pal.)

Posted my work-inspiration video.  (Was inspired.  For about 3 minutes.  A** firmly planted in chair.  Motivation rating: 1.5 on scale of 10.  Darkness rolls in.  I’m sorry.  That’s disingenuous.  My a** is hanging so low, you can’t see where my a** starts and the floor begins.)

Slash through 50 emails. (Tension climbing with the disposition of each mail.  Look down at meter count.  126 left.  Standing in ocean.  Neck deep.  Taking in water with each wave.  Gagging on the salt water.)

She left the office yesterday after lunch.  A colleague.  Her water broke.  Six weeks early.  No word.  (Damn it, CALL!)

I shut down the email train.  (Rationalizing again.  Maybe I’ll run later.  Nothing in the tank this morning.)

Little red light blinking on Blackberry. (Devil’s tool that little red light.  Blinking.  Blinking incessantly.  It’s not even a pretty red color. Maybe it’s T.  No.  No, it’s not.)

It’s an email from a former colleague.  He’s now in London with his family.  (I haven’t spoken to Steve in a very long time.  What an amazing person and talent he is.  Had no idea he was even following my blog.  Dark clouds fall away.  Mood shifts.  Amazing what a few kind words will do to my psyche.)

“Dave, I hope this note finds you well…Now, I read an article in one of our leading newspapers and felt inspired, when I feel inspired I think of your blog. It’s not the most obvious article that may be worthy of landing on your blog but I thought I would share it just in case you thought your friends would relate to it. As a Dad, it struck a chord with me. Hope you are doing well, and the family is good…..take care……Steve.”

I start panning down the article.  I finish the article.  I’m rubbing tears from my eyes.  I put on my running gear and head out the door.

“It’s not the most obvious article that may be worthy of landing of your blog.”  (Right!)

The story consumed me the entire run. (“You will wish for terrible things; you will pray for your newborn baby to die — not just once, but a thousand times. Go with it, don’t judge yourself, and the storm will pass.”).

If you read nothing else today, take a moment to read the story below.

Running Time this morning? 39 seconds ahead of last Sunday’s pace.  A new personal best.  Steve, I owe to it you for bringing the light back.  Thank you.

Enjoy your Saturday.  That is, after reading the story below.


About a Boy

The Times, July 16, 2012

By Tom Bickerby

A year on from the shock of having a child with Down’s syndrome, Tom Bickerby writes a letter to himself.  But give it time. When your love for this boy comes on-stream in all its might, it will make you the happiest you’ve ever been.

Dear Tom, Today should have been a day of perfect happiness, but instead it has been calamitous. Your second child has just been born, and he has Down’s syndrome. You weren’t expecting it, and you think your life is over. Well, it’s not, and I’m going to tell you why.

Be warned that I can’t help much with the next few days, they are going to be awful. You will wish for terrible things; you will pray for your newborn baby to die — not just once, but a thousand times. Go with it, don’t judge yourself, and the storm will pass. Lean on the people who love you but don’t listen too closely to what they say for now; nobody can really know how you’re feeling, or how to make you feel better … except me, but then I’m cheating. I am you, writing from a couple of years in the future to tell you all the things I know now that I wish I’d known then.

The first and most important thing to say is that you are going to love this child. I don’t mean love in a qualified, fond sort of way (although even that may seem unimaginable). No, I mean really love: on an elemental, mountains-and-oceans scale. And it won’t be an effort. It won’t be “in spite of” anything. It will overwhelm you.

The second thing to say is that the future is your enemy and the present is your friend. You will gain absolutely nothing from languishing in dread about what you think will be difficult in the years ahead. Nothing is as bad in the moment as it was in anticipation, and often it’s not bad at all. In fact, nearly all of it is really good.

The third thing to say is that other people are idiots. God love ’em, they will say things you’ll scarcely believe; well-meant, but often ignorant, thoughtless, tactless, and breezily prejudiced. You will hear again and again comments implying that every person with Down’s syndrome is the same — all of them happy, life-and-soul types; crazy dancers who love a cuddle. Take not the slightest shred of notice. People with Down’s syndrome differ as wildly from each other as people without Down’s syndrome do.

Laughing off someone’s unfortunate remark isn’t so hard.

Coming face-to-face with your own prejudices about disability is a shade trickier. Shall we confront the elephant in the room? You find disability in general, and Down’s syndrome in particular, discomfiting — maybe even repellent.

Give those feelings a lingering kiss goodbye, because they are about to evaporate. I struggle now to inhabit that attitude, even in my memory. I have seen some truly beautiful people who have Down’s syndrome (and plenty of ugly ones who don’t). Whatever you think you know or dimly remember about people with this condition, it will all be swept away on a flood of positive feelings for your own child.

I won’t pretend that it’s all going to be worry-free. For instance, the heart-rending angst you’re now feeling about the sibling relationship you have bequeathed to your older son won’t entirely disappear, although it will quieten to a murmur. I wish you could see how much Alex (May I call him Alex? I’ve a feeling you’re going to) and his big brother will love each other, how physically affectionate Alex’s brother is towards him. Your reflex urge to have a third child to help support Alex later in life won’t go away any time soon either; nor will your lingering anxiety about what will happen to Alex after you die.

But just as you are reading this message from the future, I have received numerous letters of encouragement from parents who are many years farther along this road than either of us, all bearing good tidings about their grown-up children with Down’s syndrome and the happy lives they are leading. You and I owe those correspondents a huge debt of thanks.

So don’t think your life has just taken a horrific wrong turn and diverged forever from the path you wanted to take. It’s still the same path. Being Alex’s father will involve all the same joys and challenges as parenting any other child, just at export-strength.

And where’s the harm in that? Whose deathbed wish is to have lived a life of slightly lower intensity?

You won’t believe me, but in many ways you are lucky. You’re going to meet some amazing people. They aren’t saints, they’re just supreme examples of normal humanity who feel drawn to work with children like your baby.

You would never meet them were it not for Alex and they will inspire you. You will find your son to be a magnet for wonderful, devoted souls. It will be your privilege to know them, and profoundly beneficial to you to feel so much gratitude. Most people don’t get to experience that.

Mind you, there are other characters whom you should give a wide berth. Like it or not, you’ve just been inducted into an exclusive club, but don’t make the mistake of thinking you have to get on with every member. Some of them are miserable company. There is a subset of parents of children with additional needs who make it their life’s calling to become dysfunctionally over-committed, driven servants of their children’s condition, in a way that seems ultimately to have little to do with their kids’ wellbeing and more to do with their own self-esteem. Sounds harsh, and may be unfair, but don’t waste time on them.

Trust your instincts about whose company will have a positive effect on you and your family, and leave the others to mix with each other. Often those most eager to share their advice and hard-won wisdom, in the guise of offering help to novice members, are the ones who just get off on knowing more than you, or trumpeting how hard it has been for them, or how unusually easy. None of that helps.

Your resilience and optimism will be fragile at times, and a disheartening encounter with the wrong person can be toxic. Even among your closest friends and family, some will deal with your new situation markedly better than others. Cherry-pick the life-enhancing friendships for a while and let the others lie fallow until you’re ready. In some cases you’re going to need to help them get over this new feature of your life far more than they’ll ever be equipped to help you.

So preserve your energy. It’s tiring enough having two young children, whatever their chromosomal particulars. I’m told we have fights ahead, going toe-to-toe with a sometimes indifferent, sometimes downright unsympathetic system.

My only experience of that so far has been applying for the Disability Living Allowance. This involves filling in a form of biblical length and hellish tedium, in which you have to catalogue and dwell repeatedly on every detail of your beloved child’s disability. It is an exercise in desolation.

And while I’m accentuating the negative, I ought to mention the guilt. That is what’s left behind when the anger passes, and I’m sorry to say it seems to last. It’s impossible not to feel it’s our fault on some level, despite plentiful statistical evidence to the contrary. On top of that, we never feel as though we’re doing enough to help him. One can always do more exercises, more sign language, more courses, more therapies.

That is as bad as it gets, though, and on the other hand, I’ve barely begun to enumerate all the good things. Prepare, for example, to discover a panoply of new reasons to burst with paternal pride. You didn’t see that coming, did you? I mean, you now have a child who probably will not best his contemporaries in most competitive endeavours. Many people will not find him attractive (although, again, they’re idiots; you’re not going to believe how beautiful he’ll be). He will be floppy as a rag doll for a while and, while all your friends’ babies are going to zoom past developmental milestones, your boy will lag far, and then farther, behind. If that sounds depressing, it really won’t be. You’ll be as proud of him the first time he does something new as if he’d won a Nobel prize.

Not convinced? You know me, and I’m no Pollyanna. I’m not painting a rose-tinted picture. This is my true experience. You wanted a second child, and now you’ve got one. He’s not what you were expecting? Fine. Just remember that different isn’t the same as worse.

The sensation of parenting Alex will be almost indistinguishable from that of parenting his brother. You have all the same duties and responsibilities, towards someone who really needs you. Isn’t that rather the point of parenthood, whatever the child: to steward a life with care and love? With the best will in the world, you will always do an imperfect job, but embracing imperfection (cherishing it, in fact) is a skill you are going to be honing from now on.

So dry your eyes. You will be a good father to this boy, have no fear. Set aside your own feelings of loss and lift your gaze. While your love for Alex is still gathering pace, use the time to notice how readily everyone else adores him. The nurses in hospital, your family, your friends, even some strangers; they all respond to him in a way you’re right to envy — with unconditional, instinctive devotion.


Article from: The Times – About The Boy

Comments

  1. Tears rolling, no words sufficient….

    Like

  2. That was beautiful…and I’ve lived a bit of that, with a child who was diagnosed with another illness as a baby, and who is 18 now. We become stronger and more resilient, and we love completely. Thanks for sharing that David, such a truly beautiful letter. 🙂

    Like

    • Thanks Carol. Your own personal experience must contribute to the beauty “transference” to your photos and quotes…

      Like

      • Thanks David…living in the present becomes very important. There are still those moments when the sadness of it all still tears you apart, which was the reason I wrote the poem “Dear Child of Mine” in the middle of one particularly difficult night. But through it all, each new day is cherished…and the parents of challenged children learn what true bravery and strength are.

        Like

  3. lkanigan says:

    Wow, what a roller coaster of emotions from your blogs today. This one especially. We had good friends yesterday have their second child…a boy. For weeks & months you pray that all goes well & the baby is “normal” & healthy. We all forget that every child born is a miracle and they have greatness in their own way! Great article Dave. Makes you want to hug the kids a little harder!

    Like

    • Thanks Lorne. Yes, so many things need to go right, and most often they do. It truly is a miracle. As to hugging the kids, one is still in bed (10:46am) and the other is visiting friends during overnight stay. 🙂

      Like

  4. How powerful. Thanks for sharing. I loved the line “supreme examples of normal humanity”. I will come back and read this again. Much to think about.
    – Michael

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  5. One of those times when the limitations of my vocabulary become glaringly evident. There are no words – for the magic your friend has woven in his letter and for the incredible way you inspire others and touch one soul to another. Go ahead, shake your head in disagreement, that’s fine – but it’s also true.

    Like

  6. Reblogged this on Flowers, Trees, & Other Such Gifts of Nature and commented:
    There is a beautiful letter included in this post from David Kanigan, who is an incredibly inspiring person himself. Please take the time to read. 🙂

    Like

  7. Wow! I’m speechless. Thank you, Dave.

    Like

  8. Tearing up here!

    Like

  9. LaDona's Music Studio says:

    Beautiful.
    Puts a lot of things – like stupid apostrophes and excess emails and a sore, albeit healing, foot – in perspective.
    Funnily enough, I’d also love to hug a kid – but one’s at work, one’s away at a sleepover, and one’s still in bed (9:55).
    I sure hope everything goes well with your colleague. Thank you for posting this, Dave.

    Like

  10. Thank you for sharing this wonderful story, so touching and transparent.

    Like

  11. Beautiful story, David. Thank you so much for sharing.

    Like

  12. Tania Nazaroff says:

    I was referred to your blog by a very good source – someone who knows you well and who fell in love with you when you entered this world. I listened to her recommendation while in her kitchen with the sweet smell of fresh dill and the hum of hummingbirds nearby – treasures of my childhood that still comfort me.
    Nice blog Dave – your Mom was right.
    Hope all is well with you.
    Tania

    Like

    • Hi Tania. Thank you. How long has it been? You couldn’t have been more than 5 years old when we met in MacKenzie, BC. Hope you, your family and your Mom and Dad are doing well. Dave

      Like

  13. Andrea Tyrell Grant says:

    Powerful! Just powerful. You always bring us such strong and powerful messages.

    Like

  14. Steve Allen says:

    Hey Dave, thanks for posting my contribution to your blog, am pleased so many found it as inspiring as i did. 30+ seconds improvement -maybe I’ll send more!! Take care and keep doing L L L …..first email I read each day!

    Like

    • Hi Steve, thanks again. You made my day and weekend…and as you can see from the others who liked and commented on the post, you spread inspiration all over. Take care. Dave

      Like

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