Content Note: Mentions of child illness & hospitals
My sweet boy sleeps beside me now, his rhythmc breaths interrupted only by toddler sleep-sighs. He is divine. And I feel so relieved to hear him breathe.
Because he almost wasn’t born, he almost didn’t get the chance to take his first breath.
Because when he was born, I sat by his side for hours every day for five weeks, watching his tiny body fight for every breath.
Because he stopped breathing last week. He almost died, and I thought I would not have another of these sweet moments with him by my side.
When I brought him home from hospital last week, I held him tight the same way I did when I finally brought him home from hospital after his birth.
I soaked up every detail of every inch of his body. I treasured every breath. As I’m doing now, while he lies beside me sleeping peacefully.
This sharp focus on the beauty of his every breath, has given me pure joy at his very presence in my life. He is a wonderful child – a cuddly kid with a great sense of humour. He is adored by his siblings and extended family.
But this sharp focus on his life has also brought remorse – for forgetting so quickly the joy we felt when we first brought him home. For grieving, however briefly, his neurological and chromosomal differences.
It has brought relief – relief that I have spent almost every day of his life in his presence, protecting him from those who want to take him and change him; slowly getting to know each other in the gentle safety of our relationship.
Relief that I finally started to get things right by the time he joined our family, and that he has benefited from his older siblings trailblazing their way through our hearts and lives.
Relief that he is here, and I get to lie beside him this evening and watch him breathe.
To you, parents, I beg, please remember that feeling of deep appreciation and gratitude you felt for your child’s life on their birth day. If your child is newly identified as different or disabled in some way, work even harder to make space amongst the confusion, to remember those feelings.
Watch them tonight as they breathe and soak up every inch of their body. Hold on to that feeling as you live your days together, even on the hard ones.
Don’t listen to a world that wants them to be different or more.
Appreciate their presence and the beauty of every breath.