Putting my daughter in the pram to wheel her out of hospital was intoxicating.
We were told that we would likely need IVF but conceived naturally, then somehow breezed through a high risk pregnancy with my biggest problems being morning sickness and heartburn. But our fairytale fell apart when she was born and struggled to breathe.
For the first three weeks of her life I’d drive home from the hospital to the empty bassinet, to catch a few hours sleep while she received around the clock care. The day I wheeled her out, I finally felt like a normal Mum. I was using my pram, my car capsule. She was in clothes I had bought her. She was sent home with an apnoea monitor, a CPAP machine and a feeding tube.
It wasn’t going to be easy, but we couldn’t wait to get her home and start our life as a family.
When we pop out to the shops, people see the pram and have a peek inside. Who can resist a baby, right? They’re smiling as they look, but then they see the yellow tube that comes out of her nose and is taped in place on her cheek.
Sometimes the smile just falters and they look away. Sometimes they physically pull back and carry on their way. It’s a surprise and they’re uncomfortable, but even though I barely see her tube, I understand. Sometimes they look up, at me. I feel my back stiffen, bracing myself. I try to smile like I imagine the mother of a baby being admired normally would.
“What’s wrong with her?” And so I explain. I answer their questions patiently. I try not to let my voice catch.
But I don’t want her to be defined by her condition. The fact that she has Pierre Robin Sequence doesn’t account for her eyes that sparkle when she smiles. Her cheeky sense of humour. That she’s just started to laugh, discovered her fingers and can almost roll over.