Lost Together

July 2, 2011

“And if we’re lost, then we are lost together” – Lyrics from Lost Together by Blue Rodeo

About a year ago when the finale of the television series Lost aired, I had a sudden thought.  It occurred to me that parents of children with special needs share a bond similar to that of  the Oceanic 815 passengers who crashed onto a remote island in the Pacific.  Like the characters on this iconic television program, our worlds were shaken to the core without any warning, and we found ourselves in uncharted territory struggling to survive.  However, rather than crashing onto an island, we crashed into the world of Down syndrome.

Like airline travellers everywhere, we probably had fleeting thoughts of, “What if something happens?”  during our nine-month journey, but I don’t think anyone truly expects anything other than a smooth arrival.

I have mentioned before that, like the survivors on Lost, I sometimes feel I have been transported to a parallel dimension.   It’s a world where strangers approach you with messages you would have never heard if you did not have a little person with Down syndrome by your side. As Kate, Jack, Hurley, Sawyer, and the other characters on Lost have found, there can be days of extreme isolation and lives are forever changed. 

What also struck me was the bond these characters developed because of their shared experience.   People whose paths would have never crossed if they hadn’t taken the same flight now found their lives inexplicably linked, and although this might sound extreme, I sometimes have the same observation when I gather with other parents from our local Down syndrome association. 

I have literally met hundreds of people merely because my daughter was born with an extra chromosome.  Because Canada is such a diverse country, the families I meet are diverse as well.  Some come from other countries originally, some speak different first languages; some are older, some are younger;  some have big families, some have small.  Some of the moms stay at home with their kids, some work; some find it all fairly easy, some find it excrutiatingly difficult. 

But for whatever ways we are different, Down syndrome creates a connection that is incredibly strong. I find myself drawn to these families because they understand my experience so completely.   I can tell them we went for our neck xray last week, and no explanation is needed.  We can throw around terms like ASD, VSD, OT, oral-motor therapy, low muscle tone, Trisomy 21,  Brushfeld spots, and so on, and we might as well be talking about the weather. We adore each other’s children and cheer them on when they achieve new things.  Ours is a club that none of us set out to join, but were signed up for nonetheless. And like me, they struggle to raise their child as best they can in a situation that for many is completely out of the ordinary.  Never mind private schools and privilege, families in this club are back to basics.  What we strive for is the health, happiness, and acceptance of our children, and together we work to accomplish this.

Down syndrome may not be a remote Pacific Island, but it can be extraordinarily beautiful, and only a precious few will see these sights. Like the folks on Lost, there are those who feel we have been chosen for this experience and others who believe it was all just a random act of genetics.  However we got here, these new relationships with such amazing families are a tremendous gift–a gift that only our children could have given us.  Some may wish, like the characters on Lost, that they could get off the island and return to their former lives.  But I for one am going to sit back and enjoy the view with the fabulous people who happened to be on the same flight.

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{ 17 comments… read them below or add one }

Sarah July 2, 2011 at 6:01 pm

Just a beautiful post. And couldn’t agree more!

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Heather July 2, 2011 at 6:21 pm

Thanks Sarah! And your family is one of the wonderful ones we’ve met on this journey!

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Maureen Braun July 3, 2011 at 10:31 am

Isn’t it wonderful that our children take us places that we would have never dreamed of going…. It shakes us and wakes us up to a bigger life. It does not always feel good at the time, but often we are more expanded and more in touch with what is real because of it.

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Heather July 3, 2011 at 12:00 pm

Yes, I completely agree!! It’s hard to imagine going back now.

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Julie Cole July 4, 2011 at 8:17 am

What a beautiful post!

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Heather July 4, 2011 at 8:29 am

Thanks Jules!

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Julie Cole July 4, 2011 at 8:40 am

what’s your twitter handle? I want to tweet this out :) Don’t message me to say you don’t have one….lol!

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Rania July 4, 2011 at 11:27 am

Fantastic Heather! So glad to be on the journey with you.

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Heather July 4, 2011 at 11:40 am

Thanks for commenting, Rania! Hope to see you guys over the summer….

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Marie Dunn July 4, 2011 at 1:02 pm

I feel so priviledged, honoured and at the same time humbled to be on the same flight as you, Heather. If I could do it all over again I wouldn’t change a thing. Thank you for the post. I am profoundly moved. Marie

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Heather July 4, 2011 at 1:20 pm

Me neither…. families like yours inspired these words….. xoxo

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Redneck Mommy July 4, 2011 at 4:57 pm

So well said. I don’t have a DS child myself, (I do have a lovely niece withDS) but I am the mother of two special needs boys so I get it. You completely nailed what I often feel. Thank you!

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Heather July 4, 2011 at 5:42 pm

Hey! Good to hear from Redneck Mommy! I’ve read your story! Cheers!

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heather hamilton July 4, 2011 at 5:28 pm

Lovely post- I’m also a mom from that island- I’ve seen the beauty and pain. There is comfort in not having to explain – to connect with others who get it. Thanks

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Heather July 4, 2011 at 5:43 pm

Thanks for visiting! Yeah, and it’s funny – you don’t even have to be talking about DS… you can just be.

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wratwrds July 4, 2011 at 7:02 pm

Beautiful post. While nobody has DS in my family, it is chock-full of special needs — and an appreciation for what we have and who we are in life.
I look forward to ready many more of your posts.

Thank you. : )

Pam @writewrds

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Heather July 4, 2011 at 7:48 pm

Thank you! I’m so touched by your words. I agree – I think this new way of looking at the world definitely isn’t diagnosis specific!

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