Some Clarification About Down Syndrome for My Past Self


I wish I’d had a crystal ball the night I gave birth to Oscar. That way when they told me they suspected he had Down syndrome, I could look at me now, two years later, and see that life isn’t over. Life is actually pretty fantastic.

If I’m being honest, in the moment we learned his diagnosis, I felt like my world was ruined. I remember laying in that hospital bed, staring at my husband, Chris, and willing him to tell me everything would be OK. But he couldn’t. Right then, he didn’t know if it’d be OK anymore than I did. Two rabbits stuck in headlights, looking down at our baby and feeling like our world had been shattered.

If I’d had that crystal ball, I would have seen what my son’s life would be in reality and what his diagnosis would mean for us as parents. Even though our family looked slightly different from the one I imagined for us, all was as it should be.

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I want to go back two years and tell that girl laying there in the hospital bed, to replace the feelings of grief, sadness and anger with different emotions. With hope. Hope for our baby’s future. I’m ashamed to say I had a stereotypical view of children with Down syndrome. So, so sad. I had a view of what kind of life that child would lead — an unfulfilling, depressing life. How very, very, very wrong could I be.

If I could go back and tell the hospital bed me the things I’ve learned, I reckon I wouldn’t have been anywhere near as scared.

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Dear 34-year-old rabbit stuck in headlights, me!

So, here’s the thing,

Life didn’t go the way you planned it to, but actually it’s even better than you ever could have imagined. You know those friends you thought you’d lose because your son had Down syndrome? Well, you haven’t. Old friendships are stronger than ever. New friendships have been formed. Friends have been your constants, and you will be forever grateful. No one turned their back. You were being ridiculous.

Oh, you get to go on holiday. Trips aren’t always as relaxing as they once were. But you do go on holiday, so don’t worry about that.

The future is a positive, bright one, thanks to awareness and people’s acceptance.

The grief you felt for the child you thought you’d lost has long gone. It’s been replaced with love, a whole bucketload of it. Unconditional love, stronger than you ever could have hoped.

Your family? They’re just the best. They love Oscar more deeply than you thought possible.

And you know how you always thought you were weak? Well, you’re not anymore. You’re much stronger. You don’t cry during romantic comedies like you used too. When you went to the cinema with your bestie a few months ago, she cried and you didn’t. Totally unheard of. See?

The medical team at the Royal Brompton Hospital in the U.K. are actual angels in your eyes. You will never forget all they did for your baby.

You’ll write a blog that, to your surprise and delight, will help others in a similar position to yours. Hey, even people who don’t have a child with Down syndrome say they’re enjoying it. That’s pretty special, hey?

Having a child born with Down syndrome can happen to anyone. Old moms, young moms. Anyone.

The worrying? That hasn’t stopped. You’ve always been a worrier, but now you focus on the here and now and enjoy it, rather than panicking about the future.

Oscar has Down syndrome, but it definitely doesn’t define him as a person.

You’re probably a bit nicer than you used to be. Before, you were kinda a little self involved. Now, you’re mindful that other people may be going through stuff you know nothing about. You always try to be kind.

Chris is a good dad to Oscar and his brother, Alfie. Yes, you had another son 16 and a half months after having Oscar. I know, crazy! Anyway, you needn’t have worried Chris wouldn’t have loved him back then. He loves him with every inch of his being. I mean, he doesn’t always remember he’s got two sons. If we’re at a barbecue for example, invariably he’ll be too busy talking to Auntie Wendy or Uncle David to notice that Oscar’s about to eat Nanny’s flowers… multitasking has never been his strong point. Yeah, it’s still not.

Oh and that ludicrous notion that Chris would leave you because you’d failed by giving him a less-than-typical child? Silliness. You guys are stronger than ever (unless of course it’s this week, when you accidentally stripped the enamel off the woodwork in the kitchen by leaving stain remover on an item of clothing that seeped through to the wood. You weren’t the most popular. OK, maybe not that strong this week but on the whole, strong).

Oscar is eager to learn, to explore and is fiercely independent. So you needn’t have worried about that, either.

There is no such thing as conventional beauty. Oscar is perfect to you.

There are challenges in raising him, but the love far outweighs anything that crops up.

You’ll learn as much about yourself as you will about Oscar.

You shouldn’t have underestimated yourself. You’re coping just fine.

Oh, and you should never have underestimated him. Oscar surprises you every day with his strength and determination.

The milestones? So they might take a little longer to grasp. But when he does grasp them, my goodness, they are the most memorable, magical moments.

Oscar and all his friends are each unique. There’s no stereotype. This makes you happy. They are loved, too.

Children with Down syndrome have meaningful relationships with their siblings. You were worried Oscar wouldn’t have that with a sibling. Now, when Oscar and Alfie look at each another and laugh, you melt. Their connection is exactly how you imagined it would be before you learned your son had Down syndrome.

So life, without question or doubt, is better with Oscar in it. I promise you. Oh, a final note and just for the record — “Sometimes the things you were most afraid of turn out to be the things that makes you the happiest.”

Love,

(Almost) 36-year-old, happy me!

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“On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100 percent… And that’s pretty good”

This post originally appeared on Don’t Be Sorry

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