Welcome to Elfie’s blog

I’m the Mama of three young kids and we live in London with my husband and two cats. I mainly blog about things that make children smile, get very excited, or find totally amazing … without taking up too much effort on your part!  I hope you enjoy …

Dear Mama…A Guest Post For World Down Syndrome Day

A Guest Post For World Down Syndrome Day by Catherine

 

Dear Mama,

Breathe.

It probably seems that the world has ended. Somebody, possibly a midwife, or a consultant, has just uttered the words that no expectant mother wants to hear, “We think there might be something wrong…”.

Maybe your ‘foetus’ is missing a nasal bone, or their limbs are short, or, that crucial measurement at the back of their neck is wrong. “We think it might be Downs Syndrome…”. Each sentence ends in …, unspoken sympathy, hanging.

Everything is a bit blurry right now. You can hear them speaking but the words dont seem to be registering.

 

luluscan

 

Breathe.

I’ve been there, in a downward spiral of numbers, sympathetic faces, ever increasing bad news, and honestly speaking, from 18 months down the line, this moment was as bad as it gets. There are trials ahead, its going to be hard, whether or not you choose to proceed, but nowhere on my journey was anything so shocking, so earth shattering as that awful moment. From here on in, you’re braced, prepared, ready, and its not so bad.

You are going to have to develop a thick skin, because words like “termination”, “disabled” “quality of life” are going to become words you are familiar with, tact and diplomacy, not so much. You are now the property of the consultants, specialists, sonographers, phlebotomists, midwives, and sensitivity isn’t always their strong point. Everyone you know, on hearing the news, will have an opinion, a platitude, a cliche and a piece of advice for you and most of them will be unwanted!

You are going to hear things like, “think about the future”, “what will happen to it when you die” “you have to consider your other children”. A LOT!

There will likely be tests. Quite a few. Amniocentesis, scans, blood tests, more scans…

There may well be more bad news. A heart condition, bowel problems…

Am I selling this to you? No? I’m sorry, stay with me!

What about if I tell you that in 6 months or so, you are going to meet a small human, who looks more than a little like you, who will rock your whole existense and who will render all of that other stuff nothing more than a minor discomfort?

It’s true. Honest.

We found out at our 12 week scan that it was likely that our 3rd child had either Downs, a heart condition, or both. It was horrible. Our teenaged children were there with us, and none of us really knew what to do. 1 in 5 were the odds, a trip to London and an detailed scan took those odds to higher than 1 in 3, and a CVS confirmed the diagnosis. Further tests confirmed a complete AVSD, a severe hole in the heart common in children with Downs. Our little girl would need open heart surgery at around 3 months of age.

At this point that thick skin I mentioned came in handy, those helpful opinions came thick and fast and even as a rookie, with google as her reference, I could tell that there is a lot of ignorance out there about Downs. Smile and nod became my default setting.

One small ray of sunlight during that awful time was the reaction of my teenagers. They showed a maturity far beyond their years and offered quiet, calm support, and a simple statement, “We dont care. She’s still our sister”.

It was a long 6 months, and I spent much of it worried for the future, frightened for my relationship and utterly terrified of this child we were getting. Would I love her? Would she be hideous? Which one of those slighty scary looking adults with Downs that I passed in the street would my daughter turn into? I cried a whole sea of tears and the two days prior to delivery, I sobbed non stop.

And then we got to the good part.

She was born one murky march afternoon, after a long induction and a short labour. Lucy. 7lbs of quiet beauty. And from the first second I held her, all that other stuff, the negativity, the ignorance, the terror, became irrelevant. Just like that, and I found a fierce new focus to my life! And I was IN LOVE!

 

cateylulu

 

A little fighter, she spent 10 days in hospital, had a feeding tube inserted, had never ending heel pricks, cannulas, monitors and rarely complained. She spent 10 weeks at home, tired and wan, medicated and struggling all the time with her own heart, whilst stealing everyone elses! From the first moment, her navy eyes had a smile in them, and once they locked onto you, you were lost!

At 12 weeks she had her surgery. Day 1, open heart surgery, day 2, off the ventilator, day 6, home on the train, with a wide smile and a pink crocheted crown on her head! Keeping the other travellers amused and earning herself a round of applause when I let on that she’d just had her heart repaired!

 

lulucrown

 

And she hasn’t really looked back. Developmentally, she is holding her own alongside her ‘normal’ peers, and every day brings a new achievement. Today, she learned how to sit herself up. Last week she learned the simple sign language gesture for milk. She brings light and happiness into our lives every day and ‘joyous’ is the word that sums her up most accurately. Her siblings adore her, her grandparents adore her, her Daddy and I adore her, the dog thinks she’s okay and this child has afollowing! At the supermarket, the GP’s surgery, the local cafe, on facebook, in the UK, in the US and in Australia, she has friends everywhere!

 

lulu chocolatelulusmile

 

And she doesn’t just bring joy. Since we found out about her, she’s brought people. Friends. Other parents of children with Downs, who have offered patience, help, support and advice, health care providers with sensitivity and empathy, and most precious of all, other amazing little people, ‘afflicted’ with the same ‘disability’ who also bring nothing but joy and love to our world.

Anyway, what Im trying to say, Mama, is breathe. Because you can be okay. It might take a while, but things will get better, and life will be good. Although right now there is shock and sadness and fear, there can and will be light and joy and fun. Just hang in there!

All my love, Catherine.

Facebook – Down Syndrome Raising Awareness and Shifting Attitudes

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33 comments

  • Cherry
    April 12, 2017 AT 6:51 PM

    Loved reading this, it made me cry, smile and feel lots! It’s exactly what I’ve been through so far.. still waiting for the next 3 months to get to the part where I meet my little miss and will hopefully feel just like you did when you met yours! Thank you for that

    • International Elf Service
      April 13, 2017 AT 8:38 PM

      Hi Cherry – oh big congratulations on your new arrival to be! That’s such exciting and wonderful news and I’m so pleased you enjoyed this post. xxx

  • Mummy Fever
    March 26, 2015 AT 1:42 PM

    I have goosebumps – beautiful post, thank you for sharing this #brilliantblogposts

    • catherine
      March 26, 2015 AT 5:24 PM

      Good goosebumps I hope. 🙂

  • catherine
    March 26, 2015 AT 11:36 AM

    Thank you Nikki.
    Lucy truly is a blessing. I love sharing her with people, and maybe changing their outlook of Downs just a little. X

  • Rachel
    March 26, 2015 AT 10:09 AM

    This is such a beautifully written post and gorgeous photos of little lucy! A fantastic read for workd Down’s syndrome day. So glad to have caught up on it on #brillblogposts

    • catherine
      March 26, 2015 AT 11:47 AM

      Thank you. It’s great to be able to share my joy. X

  • Emma
    March 26, 2015 AT 10:08 AM

    Thank you for such a beautiful and touching post, it brought tears to my eyes. It is written so well and would be comforting for anyone going through the same experience.

    • catherine
      March 26, 2015 AT 11:37 AM

      Emma it came from the heart.
      I really hope it does give a little comfort. X

  • Talya
    March 26, 2015 AT 9:13 AM

    Oh my gosh such a beautiful post I have tears in my eyes thanks for sharing #brilliantblogposts

    • catherine
      March 26, 2015 AT 11:45 AM

      Thank you for your comment. <>
      🙂

  • Nikki Frank-Hamilton
    March 26, 2015 AT 12:11 AM

    Oh Catherine, what you have been through and how difficult the unknown was. But she is a beauty and she radiates joy. And pure love. Blessings to you all!

  • Lisa@intotheglade
    March 25, 2015 AT 10:33 PM

    Oh this is a truly inspiring story, you write with such love about Lucy’s navy eyes and her stealing your heart. The photographs are beautiful she is adorable. I love the pink crown too, it suits her brilliantly. Other mums to be are going to find this a great comfort. You are gorgeous little Lucy xx

    • International Elf Service
      March 26, 2015 AT 11:22 AM

      Thank you so much Lisa – I’ll pass your really lovely comment on to Catherine. Lucy is totally adorable it has to be said! xxx

    • catherine
      March 26, 2015 AT 11:39 AM

      It’s easy loving Lucy! 🙂
      With or without a crown she’s a proper princess! <3

  • Julia @ rainbeaubelle
    March 25, 2015 AT 10:22 PM

    What a wonderful post to read, so beautifully put and in sure a massive comfort to any expectant mum in your position. Your daughter is absolutely gorgeous, what a cutie! The photo with the crown is adorable and all the others! Really lovely post. Lots of love x

    • International Elf Service
      March 25, 2015 AT 10:25 PM

      Thank you so much for popping in Julia – I’ll pass your lovely comments on xxx

    • catherine
      March 26, 2015 AT 11:40 AM

      Thank you. X

  • CrispyFB
    March 25, 2015 AT 8:10 PM

    What a lovely lovely post and I can’t believe how more and more gorgeous and sweet Lucy is getting!! She is such a wonderful baby and it’s not a cliche to say I think you were blessed with her 🙂 It’s so good to see (I presume!) recent photos of her 🙂

    As you know, our 1 in 5 (that we both had around the same time) was one of the ones that wasn’t, but had she been then I know a post like this would have helped. There are much worse things than T21 after all.

    • International Elf Service
      March 25, 2015 AT 9:58 PM

      Thank you so much for your lovely comments. I’ll pass them on xxx

    • catherine
      March 26, 2015 AT 11:41 AM

      Hey Crispy,
      Blessed is exactly right. T21 is a blessing, as is my beautiful girl. 🙂

  • Mini Travellers
    March 25, 2015 AT 2:48 PM

    I am so so touched by your post. Thank you so much for linking it up to #sundaystars Your daughter is gorgeous and I think it is so important for people to read your story. I think it will definitely help other mums to be, definitely. Keep shouting about how wonderful she is and people will listen, and it will help. Thank you for opening eyes.

    • International Elf Service
      March 25, 2015 AT 9:58 PM

      Thank you so much for your lovely comments – I’ll pass them on xxx

    • catherine
      March 26, 2015 AT 11:42 AM

      Thank you. That is truly my intent. 🙂

  • catherine
    March 25, 2015 AT 1:54 AM

    Hey guys. Thank you all for your lovely comments. Lucy IS gorgeous and we’re very proud of her . I hope other story helps other mums to be, even just a little bit. 🙂

  • Mama, My Kid Doesn't Poop Rainbows
    March 24, 2015 AT 1:24 PM

    Gorgeous post and a gorgeous girl! Thanks so much for sharing. I’m going to spread this around a little xxx

    • International Elf Service
      March 24, 2015 AT 1:46 PM

      Thank you so much for popping in and yes I totally agree – such a gorgeous girl with a smile that couldn’t be broader! Thank you – that would be wonderful x

  • al ferguson
    March 23, 2015 AT 12:39 PM

    What a fantastic post and I Love the photos and the crown! Good for you little lady. Thanks for sharing this and linking up #bigfatlinky

    • International Elf Service
      March 23, 2015 AT 5:27 PM

      The crown is legendary! Lucy’s hats are rather famous… #bigfatlinky

  • Lisa (mummascribbles)
    March 21, 2015 AT 9:50 AM

    What a beautiful post and what an absolutely gorgeous little lady. I think times are changing and not everyone is looking at the old fashioned outlook on downs syndrome. The world is such a different place, full of equality, full of amazing healthcare, amazing teachers. The world is her oyster 🙂 I can’t get over that big smiley photo! Gorgeous 🙂 #bigfatlinky

    • International Elf Service
      March 22, 2015 AT 10:03 PM

      Hi Lisa, thank you so much for leaving such a really lovely comment and I totally agree…can her smile be any bigger?! We’ve come so far as a nation and we should be so proud of that. Onwards and upwards! x

  • Connie Feda
    March 19, 2015 AT 12:34 PM

    There have only been a few instances where I’ve read something that moves me like this post did. Best words spoken to me after my daugher was born came from an overnight nurse who I still believe might have been a visiting angel- “You gave birth to a baby, not a syndrome. She’s gonna eat, poop, cry and laugh just like any other baby. Just love her.” That’s what I should have heard from the doctor, from the geneticist and from the “well meaning friends.” I was so fortunate to have a family who embraced Hannah- and now she embraces all of us. Thank you so much for putting into words such an important message. I will be sharing this on my FB page.

    • catherine
      March 19, 2015 AT 4:09 PM

      Thank you. I was trying to write exactly what I would say to my past self. It is a hard thing to go through, but the good times definitely outweigh the bad, and I love to share that.

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