what to say when you hear my daughter has down syndrome

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I’m noticing a silence after I tell people that Moxie has Down syndrome. Since I usually “tell” people by writing and the “silence” is them not writing back as they usually do, I could be wrong. Maybe they are just busy.

But I think they don’t know what to say. I get it. I’d be the same way if a friend wrote and told me that her little daughter has Down syndrome… am I supposed to congratulate her? Offer condolences? Ignore it and delve into celebritrash gossip? I might very well not write back, not knowing the best course of action and not wanting to offend.

So I thought I’d tell you what I’d like to hear you say.

I want you to understand that for me, Moxie having an extra chromosome is about the same as her having my fair skin. I’d rather she didn’t, but the fact that she does is far from the end of the world.

There are things to appreciate about having fair skin.

As I learn more about Down syndrome, I’m sure I’ll find things to appreciate about it too. Just as there are things that I appreciate about being deaf (– like the ability to turn off the world – not to be underrated when kids throw tantrums).

Understand that I got the perfect baby for me and that I wouldn’t trade her in if I could. I’ll take the extra chromosome since it’s a part of her package, and I love – no, adore – that parcel.

So just say, “oh”.

Or that you didn’t know.

Or tell me about your uncle that had Ds and that you loved him.

Or tell me your real thoughts about it. I appreciated it when a friend of mine responded to my email about Moxie by saying that one of her greatest fears has always been to have a baby with Down syndrome. That’s honest, and I understand. It was my greatest fear too.

But please don’t say you are sorry because there is nothing to be sorry about. I chose to have this baby and I love her more than my life.

And please, I beg of you, don’t say something along the lines of special people for special babies. Or anything like I’m the perfect mother for her. Or that it’s great that I have this background in disability. Or anything at all about ‘angel babies’. That’s just not part of my faith-pack.

Tell me that you want to meet her, hold her, kiss her plumply marvelous cheeks, gaze into the deep blue pools of her eyes. Squish her delightful little legs and hold her hands. Be just as excited about little Miss Moxie as you are about any other baby. Tell me where I can find a baby-sized tutu (preferably pink), cuz I’m looking for one.

Be happy for me. I got what I wanted.

A sparkly, beautiful baby girl.


– A year later:

We got the tutu

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  1. So, I'll tell you what: I can't wait to meet Miss Moxie and hold her, kiss her cheeks and read for her (one of my passions) and watching her playing with my little girl and Micah and Boo all together! No judgements, no prejudice, just exploring the world and life the way we all should do! We will all meet up soon down the road and have lots of fun! xoxo

  2. I love, Love, LOVE what you have written and, although I am not yet a friend, I would LOVE my family to be friends with you, Mikey AND sparklingly AMAZING Moxie!!  I resonate SO strongly with how you feel about Moxie!! I have been incredibly blessed with the two most AMAZINGLY BEAUTIFUL Daughters I could ever ask for!! Through them I have learnt what it means to be unconditionally loved and all about the incredible depths to which JOY can travel! I now fully understand what it means to “Rejoice in the LORD always, I will say it again, REJOICE!!!” In the midst of great suffering and difficulties incredible joy, laughter, hope and light can be found! We have journeyed together along paths of great darkness which have led to unimaginably bright and beautiful places! At 3 o’clock in the morning, when Arabella’s bowel refuses to settle down, we have found ourselves dancing and singing on the end of the bed, or marching through the house singing “we are marching in the light of God!” at the top of our lungs! One of my favourite poems is by

    Carl Sandburg (1878–1967).  

    Chicago Poems.  1916.
    93. Joy
      LET a joy keep you.
    Reach out your hands
    And take it when it runs by,
    As the Apache dancer
    Clutches his woman.
    I have seen them
    Live long and laugh loud,
    Sent on singing, singing,
    Smashed to the heart
    Under the ribs
    With a terrible love.
    Joy always,
    Joy everywhere—
    Let joy kill you!
    Keep away from the little deaths.  

    Would I take away the pain and hurt they have each suffered as a result of their respective Asperger’s Syndrome/Syringomyelia, physical deformities and other conditions? Yes!!! In a heartbeat IF it wouldn’t intrinsically change who they are! BUT would I change either of them in any way? NO! They are EXQUISITE Blessings from God and the world is a MUCH more BEAUTIFUL place with them in it!!

    Am I terrified about what the future holds for them? YES!! But aren’t all Mothers?? Isn’t that the awful curse we have to bear to off-set the incredible BLESSINGS of being unconditionally loved and having our world turned delightfully upside down so that we learn that what we thought was impossible to live with or without actually becomes a reality we can embrace through the strength God daily supplies when we remember to ask for it?! I finally know what “the peace of God which passes all human understanding” feels like and how it can wrap you up like cottonwool and carry you through sleepless nights in hospital when you have to watch your precious Baby to make sure that she doesn’t move off her back so that her spinal fluid won’t run out of the hole at the base of her spine, and her fiesty attitude, when I won’t let her sit up, has the Mother of the other Baby in the hospital Bay in stitches of laughter just when I am about ready to scream with frustration!!  Through my Girls God has shone light and laughter in the darkest places! One night I had one of the other Mums on the ward laughing hysterically when both of us had to deal with more poo than we thought we could handle and then I took Arabella dancing off down the hallway, and a male Nurse popped his head in and said, “Now that’s a sound I’m not used to hearing… Laughter!!! And it’s SO good to see and hear you guys laughing!” and I realised how important it is to bring joy to the incredible staff who help support us too!

    I’ve also had too many nights to count where I’ve lain alone in the darkness begging God to let me know He’s there and being met with stone cold silence, but if I focus on those times I will drown in fear and be no good to anybody! At these times I guess I am most probably just like the Girls when they are so overtired that they cry and thrash around no matter what I say or do to comfort them, until they are too exhausted to do anything but sleep!

    So, yes, having children with special needs can be overwhelming but it can also bless you more deeply than you ever knew was possible!!

    Sorry to be SO wordy!! You got me onto a thought wave and so I surfed it through onto the Beach!

    1. I love the wordiness – thank you for riding that wave!

      Big love to you and yours – I’m looking forward to getting to know you all better xoxo

  3. P.S. Moxie looks utterly EXQUISITELY lovable and enchantingly ADORABLE!! Such a SPARKLING personality shines in her GORGEOUS eyes!! 🙂

  4. Margarita says:

    Can I take your post and translate it for the Group of Parents I’m in? It is exactly what I’ve wanted to say but didn’t know how to. Those sad looks or those “silent screams” of sorrows are what I hate the most. Something so simple as a smile or the “oh!” would work much better.
    Thank you for your post, thank you for sharing your soul…
    God bless.

    PS. Don’t forget to tell me if it is ok to translate it and share it <3

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