Then was four years ago. A sunny April afternoon as I lay on a hospital bed staring at the ceiling; left alone whilst the Sonographer called for a second opinion.
Then was the moment the Consultant said, I’m sorry, but your baby probably won’t survive this pregnancy.
Then was the moment your dad and I sat crying in the hospital car park, admitting our fears to each other. We weren’t cut out for this.
Then was the day you were born, against the odds.
Then was the moment your dad plucked up the courage and asked the midwife to take a closer look at your face. Your almond shaped eyes. Your misshapen head. These were the only markers; your little hand did not give a clue, it was the same as mine.
Then was when the doctor came and took blood “to confirm what we suspect”. No one said what they suspected. They didn’t have to.
Then was the moment a midwife gave up her break to bring me a Bible.
Then was the moment she prayed over you, just like she did your sister a couple of years earlier.
Then was the moment she told me that you were planned and purposed by God. She told me you were fearfully and wonderfully made.
Then was the moment I fell in love with you as I held you, lying on the bed in a hospital lift.
Then were the few hours I spent lying next to you, filled with overwhelming love for you.
Then was the moment the midwife took you away so I could rest.
Then was being woken by a doctor standing the end of my bed. You had taken a turn for the worse and the ambulance was waiting to take you to an Intensive Care Unit, miles away.
Then was watching the paramedic whisk you away after we said our goodbyes, not knowing when we would see you again.
Then were the agonising days we were apart. Both too sick to be together.
Then was the day we came to find you.
Then was the moment we saw you again. Tubed, alarmed and incubated.The moment we knew we would never stop fighting for you, never stop loving you.
Then was the moment, a week after you were born, we knew for certain you had Down syndrome. Though no one ever officially told us. It was assumed we knew.
Then was the moment they gave us a leaflet to read. As if a leaflet could tell us who you were.
Then was the guilt we felt for your sister and how her life would never be the same.
Then were the questions that we only dared ask each other. Would people love you? Would your sister get bullied because of you? Would you be able to walk or talk? Sounds ridiculous now and hard to admit.
But that was then.
Then was when I didn’t want to join this new community.
Then was when I found it hard to celebrate World Down Syndrome Day.
Then was when I wanted my life a certain way.
Then was when I got it all so very wrong about you.
Now is a sunny March afternoon.
Now I am more in love with you than ever.
Now I am looking at your eyes. Your beautiful, almond shaped eyes, and thinking how glorious they are.
Now I am staring intently at your perfectly formed features. Nothing misshapen whatsoever.
Now, I am watching your sister play with you and gently show you what to do with that toy you are struggling with.
Now I am fiercely proud of the bond you have with her and how much she loves you.
Now, there is no guilt. Only the realisation that you have brought more compassion and understanding to her life than most people will ever get the chance to develop.
Now I see you trying hard to learn to crawl. Like you tried hard to lift your head or to sit upright.
Now I see you getting attention from complete strangers. Yes they stare, but then they smile. Often because you smiled first.
Now I see you using your hands to sign the words of a nursery rhyme.
Now I hear you say hello or bye bye.
Now I listen to you laugh at Humpty Dumpty falling off the wall …again. Still as funny as the first time he fell.
Now I see you looking worried when someone is crying. The empathy you show is beyond your years.
Now I see you throw your arms around whoever has picked you up. You give them the biggest hug.
Now I see the widest smile on your face when we do the Hokey Cokey.
Now, I count it a privilege to go with you to the myriad of hospital appointments that come your way, or sit by your bedside in hospital and comfort you after another traumatic surgery or procedure.
Now, I shout it from the rooftops when you make any kind of progress, however small. But I want you to know I would still be celebrating you even if you didn’t. You are loved because of who you are not what you do.
Now I know that you are fearfully and wonderfully made.
Now I am proud to be a part of the Down syndrome community. I am proud of all the incredible friends I have made because of you.
Now my life is not how I would have chosen, but it is much better with you and because of you.
Now I am preparing to celebrate World Down Syndrome Day like never before.
Now is much better than then.
For Hazel x
Wear Lots of Socks for World Down Syndrome Day on 21 March and help raise awareness!
Text SOCK57 £1 to 70070
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