Sometimes the smallest things take up the most room in your heart

I wish I’d had a crystal ball the night I gave birth to Oscar. So that when they told me they suspected he had Down Syndrome, that I could look at the “me” now, 2 years on, and see that life isn’t over, or sad. If anything, it’s actually pretty fantastic. I felt like my world, in that instant, was ruined if I’m honest. Laying in that hospital bed, staring at Chris, willing him to tell me that 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, feeling like our world had been shattered.

Oscar, (almost) 2 years on

Oscar, (almost) 2 years on

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

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 how I thought someone looked, having had a child with DS. Sad, so very sad. A view of what kind of life that child would lead. An unfulfilling and 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 DS? 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. It’s not always as relaxing as they once were… (Please refer to my blog posted about our 13 hour road trip to Switzerland.) 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.

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– The grief you felt for the child you thought you’d lost, has long gone. It’s been replaced with love, in a bucket load. Unconditional love, stronger than you ever could have hoped for.
– Your family? They’re just the best. Loving Oscar more deeply than you thought possible.

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– And you know you always thought you were weak? Well, you’re not anymore. You’re much stronger. You don’t cry at rom coms like you used too. When you went to the cinema with your bestie a few months ago, she cried, you didn’t. Totally unheard of. See?
– The medical team at The Royal Brompton Hospital are actual angels in your eyes. And you will never forget all they did for your baby.

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– You’ll write a blog, that to your surprise and delight will help others in a similar position to you. Hey, even people who don’t have a child with DS say they’re enjoying it. That’s pretty special, hey?
– Having a child born with DS can happen to anyone. Old mums, young mums. 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

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– You’re probably a bit nicer that you used to be. Before, you were kinda a little self involved. Now you’re mindful that other people may be going through stuff that 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 16.5 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 BBQ 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.

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– 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 best popular. Ok, so maybe not that strong this week but on the whole, strong).

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– 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.

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– There ARE challenges in raising him but the love far, 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.

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

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– Oscar and all his friends are all unique. There is no stereotype. And that makes you happy. They are loved too.
– Children with DS have meaningful relationships with their siblings. You were worried Oscar wouldn’t have that with a sibling at first. When Oscar and Alfie look at one another and laugh, you melt. Their connection is exactly how you imagined it would be before you learnt your son had DS.

Friends for life

Friends for life

So Life, without question or doubt, is better with Oscar in it. I promise you. Oh and 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!

So there you go. A week today, my baby boy will be two. The last two years have been emotional in so many ways. Oscar has been a positive, that has brought those who know him and us, closer. There have been highs and lows. Happy times and sad. But as a very wise friend told me, as I lay in that hospital back then, the laughter far, far outweighs the tears. And how very true she was.

Dear Oscar,

I love that when you’re happy, you stamp your feet and do a little dance
I love that you said “Mmmmmm” when you had a sneaky a sip of my Fanta this week.
I love that you clap when Alfie’s cries get louder or when the traffic lights change to green.
I love that every morning, after I’ve got you out of your cot, you walk into our room, stand in front of the mirror and pull faces at yourself, before doing anything else.
I love that you babble away these days as we drive along in the car.
I love that when you play “ready steady go” with your daddy and you both run down the length of the kitchen, you find it hysterical.
I love that when Alfie loses his dummy, you try to put it back in.
I love that you are loved by my family and friends.
I love that I can see how much progress you’ve made in your little life so far.
I love that when we go shopping, you’re a magnet for smiles.
I love that when you’re tired, you come find me and sit on my lap.
I love that when you watch Mr Tumble, you tilt your head to one side and look slightly puzzled.
I love that you interact and love other children.
I love that you’re cheeky and keep me on my toes
And I love that when I was lying in that hospital, faced with what lay ahead… You have proved me wrong. Life most definitely goes on. Life IS happy. And you are everything and more I could ever have wanted in a little boy. Thank you.

I will love you always.

Love Mummy x

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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%… And that’s pretty good”

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13 comments

  1. Jo Hercules   •  

    Beautifully written, I remember writing a status on FB a few years back with the same sentiments as this on my daughters birthday (I say same sentiments as it was nowhere near as eloquently put as you have as I am no writer lol!) . My beautiful little princess is 7 now and every year on her birthday I think ‘I wish I knew then what I know now’ life with her and her 2 older brothers is great and more than I could have ever hoped for (DS or no DS). Your little man is gorgeous xx

  2. Helen Shiers   •  

    Sarah – beautiful, just beautiful – both the way you write and how Oscar is. Just beautiful. Be proud, very very proud! Hx

  3. Downs Side Up   •  

    Oh yes indeed, how our children make us better people, and how desperately I have wanted to turn the clock back and tell myself what I know now. How much time I wasted on needless worry and shock back then.
    Thank you for linking to #TeamT21
    Hayley

  4. Aedín   •  

    Beautiful post.How lucky your two boys are to have a wonderful mummy like you and how lucky you are to have two wonderful boys like them!I have two wonderful girls,3 and 7 months.My eldest has Down syndrome and I too would love to go back to the moment she was born and tell 29 year old me that it’s gonna be ok cos it’s more than ok-life is good!

  5. Seychellesmama   •  

    This post is beautiful, really really heartwarming. This is my first time on your blog, Oscar is gorgeous he looks like such a happy little guy 🙂 it’s amazing to look back at yourself and the fears/hopes and all of that you have as a brand new mum and see how things have panned out….generally not at all like you might have thought but oh the love for our little squishes is so much more than you could imagine isn’t it!!!

  6. Emma Lander   •  

    What a beautiful post. I had tears in my eyes because it was so lovely. I think we all have a notion in our heads of ‘how our lives should be’ and when things, out of our hands, don’t happen the way we idealised, it is like we are hit by a bus.
    I remember someone saying to me that special children happen to special people and I was annoyed at the time. While I wouldn’t use that phrase myself, I think every child is a gift no matter what they can or can’t do.
    I now focus on happiness. Who cares about anything else. If my children are happy then so am I.

    • Sarah   •     Author

      Thank you for leaving this comment Emma. I couldn’t agree more. You’ve put this so perfectly xxx

  7. Jenny   •  

    Ahhh hunny I absolutely love this post. It made me cry happy tears of how positive and amazing you are. Your beautiful little boy is so lucky to have you as his momma! Thank you so much too for linking up to Share With Me so I can read your fabulous post. Its nothing in comparison but my son is deadly deadly allergic to a lot of foods and the night he almost die in my arms I was like a deer in the headlights asking why me and why him to have to live in a bubbled world sort to speak. But wouldn’t it be great to know now and shout it at ourselves back then. Like i said not the same but I understand your meaning here! You are amazing and it was ABSOLUTELY so lovely to meet you, you looked amazing and your award was well deserved! Hope to see you agian soon! #sharewithme

    • Sarah   •     Author

      Jenny, Ive only just seen this. I’m so rubbish with all this social media stuff. Thank you for your lovely lovely comments. I know its not the same about your son, but its always good to hear what other people have to go through. Hey, whoever said life was easy/normal, may have lied a little!!! There may be bumps in the road but we got this :0) xxx

  8. ghostwritermummy   •  

    What a beautiful post, and a gorgeous little boy you have. Thank you so much for sharing your story. I know as well as anyone that sometimes life doesn’t always go as you had planned in your head, but sometimes the new path that’s chosen for us instead can be more fulfilling that any other route x x x x

    • Sarah   •     Author

      I couldn’t agree more. Thank you for your lovely comments xxx

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