I was out driving tonight. As I’m often prone to do. Sometimes at 8pm, sometimes 1am… It’s more out of necessity than anything else. It’s the only thing when Chloe refuses sleep and gets worked up that will calm her down to actually go to sleep.
When I drive I think. My mind wanders. I must admit that while I am concentrating on the road, I drive the same route every time and I could probably do it with my eyes closed (don’t worry – I’m not that stupid) that these are the moments of quiet that I actually allow the darker thoughts to appear.
Tonight as I was driving my mind wandered to the word grief. It’s such an inescapable emotion. No one is immune to it. We all feel it to some extent in our lives and, all of us are unique in how we handle it.
Grief is something to which I feel is palpable. I often feel it in me, like a short intake of breath, or quick stabbing pain. For me, I experience grief almost daily. It sounds depressing, and I guess in many ways it is. I couldn’t help it, I couldn’t shake the feeling that it doesn’t matter what I do in my day, I’m experiencing grief in my world.
We’ve been on this journey with Chloe now for about three years. From the first pre natal diagnosis, through all I’ve blogged about. From that first moment where the joy of pregnancy and the excitement of the birth was ripped away, and replaced with fear, uncertainty and the knowledge that we would never, ever be the same.
Grief comes in waves, for me, it’s almost like the constant crashing of the ocean, some days the waves are huge and powerful, and others it’s a soft break onto the shoreline.
But it’s always there. Constant. Never ceasing. A slow rhythm of crashing that never stops.
It’s because I’ve lost. I’ve lost normality. I’ve lost the dreams we made, we conjured when we decided to grow our family. The dreams of sloppy toddler kisses and hugs. The dreams of those first words. School…sport… kids parties. Graduations. Marriage. Being a grandparent.
They’re gone.
I know I know. It’s great to have hope. And expect that unexpected. To dream big! But with those dreams come big falls when are biggest ones aren’t realised. There’s the grief again. The loss.
I went to kid’s birthday party today. He turned two.
I took Chloe. For me, it was exciting, but also laced with a certain amount of grief. As I knew I would watch other children, younger than Chloe, interact and talk and have fun. And I knew that my daughter would play, but it wouldn’t look the same. And don’t get me wrong, she’s come so far and I’m so blessed to see her enjoy herself. But I also know that this possibly would come to an end.
This was her first party she was invited to by her little friends at daycare. Chloe’s quite fond of the birthday boy. She also tries to pronounce his name and will cuddle him bye. It’s seriously the cutest thing ever!
But I watched him get excited about his cake, and try to blow out the candles, I watched him get excited by the cars on his cake and he knew what they represented. And I knew only too well that I had never had that moment with Chloe for her second birthday. I might not get it at her third either. I may never get that.
Chloe loved to explore the play centre we were at. But while all the other children climbed up the equipment and knew that they could slide down the other side, Chloe simply sat at the top of the slide and refused to come down. Over and over. Another parent actually intervened (in a negative way) and another child actually pushed her.
It’s hard not to hover when I know that happens. And I also know that there might come a time when she doesn’t get invited to kids’ parties, because, well, I’m just going to say it…. other kids are often not inclusive of the ‘special kid’ and neither are their parents.
Sorry, but it’s true.
This is the truth I live with each day. Always there, wandering in and out of my mind. I have no idea what the future looks like for us, truthfully we have lost so much to be standing where we are today. And while I know there are highs and lows, and we celebrate all of those, I know that I can never escape the grief of what I don’t have.
Today I saw and little 20 month old run up to their mum, and smack a kiss on their lips. Wrap their arms around each other. And then she was off. It was but a normal moment in the day for them I’m sure. But as I watched this few second exchange I felt a stab in my heart. A sinking feeling in my stomach. My Chloe doesn’t do that. Rarely does she hug with intention instead of direction, and she’s given me about 2 or 3 kisses ever. It wasn’t so much the action that got me, but more what’s behind it, the love and adoration this young toddler had for her mum. And the fact that she could express it.
And the fact that my daughter can’t.
It’s a grief that chases me each day.
Chloe's story 