On the Night You Were Born

On the night you were born, the moon smiled with such wonder that the stars peeked in to see you and the night wind whispered, “Life will never be the same.”

And the moment I laid eyes on Elizabeth Amelie I knew it to be true. The doctor placed her on my chest and I immediately knew something wasn’t right. I commented that her nose was like her brothers and she was a sweet girl and I loved her. But I asked is she okay? Is she cute? Is she normal?

So enchanted with you were the wind and the rain that they whispered the sound of your wonderful name.

The nurses quietly reassured us. But after our persistent questioning one nurse started checking off the markers. The shape of her eyes, the crease in her palms, the extra fold of skin on her neck. I’m not convinced or unconvinced I heard her say. Her voice sounded very far away. We’ll have the pediatrician come around as soon as she can.

It sailed through the farmland high on the breeze… over the ocean… and through the trees…

The pediatrician arrived a few hours later. She also checked off the physical markers. But nothing’s for sure til the blood work comes back she said. I asked, do we tell our parents that our baby has Down Syndrome? Yes.

Until everyone heard it and everyone knew of the one and only ever you. 

I stared down at the baby in my arms in total shock and disbelief. This doesn’t happen to me. This happens to other people. I couldn’t see my baby, all I could see was Trisomy 21. This couldn’t be happening. Our 20 week ultrasound came back healthy. This is our little girl. Simon’s little sister. She’s not supposed to have Down Syndrome.

Not once had there been such eyes, such a nose, such silly, wiggly, wonderful toes.

I cried. I immediately jumped ahead 20 years and cried for the love she may never find. The husband she may never marry. The children she may never have. I cried for my sudden fear of dying and leaving her all alone in the world. I cried and cried, the nurses and doctors’ reassurances that she’s a perfectly healthy baby falling on deaf ears. I cried because I was expecting a perfectly normal baby. My doctor said she IS normal and she’s perfect. We have to work harder at redefining what normal and perfect are, he said.

When the polar bears heard, they danced until dawn.

Text messages from family and friends poured in. Embrace the beauty in the unexpected they said. But I couldn’t. I grieved. I grieved not for the baby I held but for the baby I thought I knew. The one I had dreamed of when I was pregnant and imagining our lives together. The baby with the predictable trajectory. The little girl with the familiar path I thought she might travel. The joy and victories I could imagine with ease that were suddenly pulled out from underneath me. The space where a clear, vibrant picture of my daughter had grown in my heart was wiped clean, leaving behind an empty, scary void of unknowns.

From far away places, the geese flew home.

In the wee hours of the morning, tears dripped off my chin onto her small, round head. I was floundering, sinking under the weight of our news.

The moon stayed up until morning next day.

But then I kissed her head. I breathed her in. I smelled her sweet milky breath. I watched her blink blink blinking at her new world. I blink blink blinked back at her.

And none of the ladybugs flew away.

Our sweet, sweet baby Izzy. I can’t and don’t want to explain every emotion that came and went during that first 24 hours but suddenly, after wrestling through the night with scary unknowns, the tears were suddenly tears of joy, welling up at the miracle and wonder of this little life that lay sleeping in my arms.

So whenever you doubt just how special you are and you wonder who loves you, how much and how far, listen for the geese honking high in the sky. (They’re singing a song to remember you by.)

Dave bought her a Buddha of Compassion. Not because he thinks she needs to learn compassion but because he’s convinced that she will be our teacher. That from her we will learn compassion and empathy and to be better people.

Or notice the bears asleep at the zoo. (It’s because they’ve been dancing all night for you!)

Izzy’s extra chromosome doesn’t have to define her or us as a family. Where at first I only saw her symptoms, the expression of that extra piece of genetic code, now I have to look for them. I wonder how I ever saw them in the first place. She suddenly transformed from my baby with Down Syndrome into my baby. Our Izzy.

Or drift off to sleep to the sound of the wind. (Listen closely… it’s whispering your name again!)

As Dave explained it, as you’re crossing the road of life you know there are some trucks out there that can run you over. But then you get hit by one and are surprised how it’s not that bad. You get up and dust yourself off, pat yourself down and wow, you’re still in one piece. In fact, you’re not just okay, you’re not even a fraction as bad you had imagined you’d be.

If the moon stays up until morning one day, or a ladybug lands and decides to stay, or a little bird sits at your window awhile, it’s because they’re all hoping to see you smile… 

I’m writing this blog post not because we’re sad and looking for sympathy. It isn’t sad. Izzy’s Trisomy 21 is neither good or bad, it just is. Like any other child, we don’t want to pigeon hole her or allow stereotypes to colour who she is and who she may become. We want to have open conversations and have people ask us questions. We’re not ashamed or sad and it’s not a secret – it’s only a teeny tiny part of who she is as a whole. By bringing it out in the open we’re hoping to avoid the elephant in the room. The unsure smiles as people say isn’t she cute with unasked questions hanging awkwardly in the air.

For never before in story or rhyme (not even once upon a time) has the world ever known a you, my friend, and it never will, not ever again…

At the end of the day all kids come with their own set of challenges and Izzy’s may be unique in some ways but we have no doubt that the good will far outweigh the tough. No matter what she might look like on the outside or the challenges we may face, we’ll be enjoying her with the same openness and curiosity that has little to do with her disability and everything to do with her complexity and wonder as a human being. As a dear friend said to me after we told her about Izzy’s Down Syndrome, “Isn’t it funny how finding out something like that changes everything and nothing at all.” It’s a sentiment I return to over and over because it captures my feelings exactly. Izzy’s extra chromosome has changed nothing – she will always be our beautiful baby girl, Simon’s little sister and a ray of sunshine in our lives. But it’s also changed everything – most significantly by growing our hearts ten times bigger already.

Heaven blew every trumpet and played every horn on the wonderful, marvelous night you were born.

On the Night You Were Born by Nancy Tillman

18 thoughts on “On the Night You Were Born”

  • Our job as parents is just to show our kids the world. They will lead us through it. My favourite part of being a mom is how much I learn from my kids. All my love as you begin what will surely be a wonderful journey full of love and laughs and surprises. Always surprises. That’s another fun part. You never know where they’ll lead you.

    • I’m looking forward to the places Simon and Izzy will lead us. And the surprises. Izzy is doing a great job on the surprise part so far. 😉 Sending lots of love right back at you. Xo.

  • Never before have I been more impressed with you Christine. As a woman, as an artist, or as a mother. I don’t believe you could have more perfectly captured the raw human emotions that overcome us when anything concerning our children come out of nowhere and change everything, all while changing nothing at all. I think Dave is right, and that Izzy will be a teacher to you all. What a lucky little lady she is too have found you three. I am certain that she’ll be brought up in light and love and fresh air and absolute security in knowing who she is and exactly how she fits in with her family. I’m so, so proud of you, friend. And I’m so excited to see how your little girl flourishes in your care. You’ve been entrusted with a beautifully complex little creature, and my heart and my brain tell me that you will all be more than fine. Love to your family from ours <3

  • My heart Christine! Beautifully written, but all I see are hearts full of love and a little girl who’s light shines bright! I hope you’re enjoying every minute as a family of 4! xo

  • Cherish the gift you have been given. I have a brother with Downs. He is 16 months younger than me. He is 58 and this month he will have hit a milestone of being successfully employed for 40 years. I always tell people that I am a better person because of him. He does not experience hate , envy, jealousy, there is no distinction between the rich and the poor…the heads of companies or those who carry out menial tasks…we are all the same.😊 The one emotion that shines through is LOVE. Love for each and every human being and creature on this planet. What a wonderful world if only we all cared about others as my brother does. Treasure every moment with your beautiful Izzy and continue to share your journey with the rest of us. Congratulations on the newest addition to your family.

    • Wow, thank you Cindy for sharing about your brother . Your story warms my heart and gives me so much hope and encouragement! I’m sure that Izzy’s journey will shine as much light in our lives as your brother has in yours. 😊

  • Your post has touched the hearts of so many with such honesty and love! God bless your perfect family and grant you the utmost joy in your lives together,❤️❤️❤️❤️

  • Dearest Christine, Dave, Simon and Izzy
    Thank you for your beautiful words Christine. You and Dave are such wonderful people – John, Winslow and I we send all our love to you. I can understand your sadness over the diagnosis and also am so grateful for you sharing your journey to joy through this post. Please let us know if there is anything we can do, and know that we are thinking of you and sending love,
    John, Christina, Winslow

    • Thank you Christina. Hopefully we’ll get to see you, John and Winslow soon although travelling with a newborn and 21 month old doesn’t really sound like a ton of fun so it may be awhile yet. 😉😂

  • What a beautiful introduction to your sweet girl. I look forward to watching her flourish and explore this big bright world through your photos and love-fueled written pieces such as this one. She’s one lucky lady to have you as her mama. xo

    • Thank you Tammi! I think we’re pretty lucky to have Miss Izzy and I think we’re all going to enjoy seeing this world through her eyes. I’m looking forward to being on this journey with her and of course, sharing it with friends. Xo.

  • Your raw, honest sharing is a gift to our world. The most beautiful capture of truth, my friend. I am in awe of your capacity to feel deeply, see clearly and express so incredibly at this time. Izzy has arrived in the perfect crucible of love for her to shine. We will all learn from her. xo

    • Thank you Raina. I’m so grateful that she (and all our children) have such a beautiful community of support and love surrounding them. Xo.

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