In the last few weeks of my nearly 42 week pregnancy with my last daughter, all I wanted to be was not pregnant. Four pregnancies in as many years had worn me down. I had restless legs and shocking carpal tunnel syndrome which left me banging my hands into hard surfaces in the wee hours to get some relief from the sensation. I couldn't wait for it to be over.
Then my daughter Georgia was born, and I wanted nothing more than to be pregnant again. I would have been happy to be pregnant forever, if it meant that I never had to face what it meant to raise a child with Down syndrome.
The first 24 hours after her birth could be described with one word: agony. As the reality set in, we howled like we were wounded, punctuated with brief interludes of conversation that continued only long enough for one or both of us to start again. We were plagued by fears that, looking back, I can only describe as irrational and born out of ignorance that comes from having very little exposure to the world of children with special needs.
In the first hours after she was born, I emerged from the bathroom to find Gaz cradling our baby. "Put her back," I said. He looked at me bewildered and asked, "Back in the crib?" I sobbed, "Inside me! Put her back inside me! I can't un-know this, I can't change it, I can never fix it! I want her back inside me, I want the dream of her again!" A few hours later, a midwife found us with the baby in the middle of the bed, me sitting on the edge, with my hands grasping the sides of my head, and covering my ears. She asked if I had a headache. "No," I said. "I'm afraid she'll hear the thoughts in my head, that they'll touch her, that she'll know I feel these negative things about her." The midwife assured me that she would be totally oblivious, but the guilt was all consuming.
But as we contemplated what we thought was the ruin of our lives, we didn't know that our girl had superpowers, and she had already gone to work on our hearts. It soon became obvious that she had a serenity that we had never seen in the three children that had come before her. All that she required was to be held, and she sank her whole body against whoever was holding her, and sighed, a sound I had never heard coming from a newborn. Her eyes, sightless from cataracts, still managed to convey her comfort, her ease at knowing that you had her close, and all was right with her world.
And so we realised that everything WAS right in her world. She knew nothing of the fact that the hot tears that sometimes fell on her face were ones of sheer terror. That people were telling us they were sorry that she was, and that words like "grief", "loss of hopes and dreams", and even the word "tragedy" were used to describe her existence on this earth.
And we realised that we alone had the power to change all that. Next time someone looked at me with tears in their eyes, and said "What can I say?" I said "Congratulations?" And my eyes challenged them to DARE think otherwise. My need to protect her lit a new fire in me. I was suddenly fierce.
I will never deny the fact that grief has a place when you give birth to a child who brings a set of circumstances very different to what you imagined. Because for nine months, I thought I knew my Georgie. After all, she dwelled in me, our hearts beat next to each other. I didn't know what she would look like, but I imagined it would be pretty much like what the other three looked like, and I very much imagined the sisterly relationship I would watch develop. I hadn't met her, but I knew her. Until she emerged with her almond-shaped eyes and her floppy muscle tone, and I felt I had been carrying a stranger, and I did not know this child at all.
Then I took this stranger that was my baby home, and vowed to raise her exactly the same as I did with every other baby we had. And before long, it was … easy. Because it might have taken a while for me to feel like I knew her, but she knew me. She always knew me. She'd heard me read her stories and heard her daddy and sisters talk to her through my tummy. We took her for a walk through the house, and told her which room was which, and even though she couldn't see them, she could feel that she had walked through them before, and she was home. And I realised that nothing could lay waste to my hopes and dreams but my own attitude. When you realise there is nothing tragic about a situation, it simply ceases to be a tragedy.
And so, in Down Syndrome Awareness Month, I give you Georgia. If you want to see something sad, best you look away now. If you want to see the joy that comes from opening your heart to someone you never knew you wanted or needed, feast your eyes
Does this look sad to you?
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