Grief is something I know a lot about. For at least a year it was a suit of sadness that I lived in. And I lived there by choice. I let it consume me. It accompanied me every day wherever I went. I would take Phoenix to the mall and see all there other parents with their children with 46 chromosomes. And I would cry at the unfairness of it all. How did I get to be the one who ended up with the kid with Down syndrome? Why couldn't it happen to them?
I thought some very ugly thoughts. And I cried rivers, and rivers of tears. And I obsessed, and ruminated and yelled about the unfairness of it all. I went down the same road over and over again and still nothing changed.
I saw a post partum counsellor for a long time. And I said the same thing over and over: "It's not OK that she has Down syndrome." She had many different responses for me during our sessions, but this one stuck with me the most: "Children aren't McHappy meals. You don't get to order what you want."
But still I continued to run into the same brick wall, because it was not OK that Phoenix had DS. Until I realised that the wall wasn't going to move, and that in order to move forward I had to go around it. And I did what I have done so many times in the past to make sense of events. I separated things into their parts and held two contradictory views. It wasn't OK that she had Down syndrome. But I could be OK that this was my daughter.
We also looked at separating what was a worry, from what was a problem. A worry is something that may or may not happen way in the future that I have no control over. A problem was that I couldn't get my 4.5 month old to nurse. And as I focused on problems rather than worries, my grief became easier to bear.
I also did something else that allowed me to grieve fully and completely. I didn't judge my thoughts and feelings. I didn't allow myself to feel guilty for anything I felt, thought or said while I was trying to come to grips with what DS meant to me. I allowed it all to come pouring out, no matter how dark and dirty.
And you know what happened? It freed me. It allowed me to leave the darkness in the past and to focus on the here and now. It allowed DS to settle within me, and I was able to take off the suit of sadness and put it away. It is still a part of my history. It is still part of my story. But it doesn't control me any more.
Down syndrome is part of our lives. I'm still not thrilled she has it. But Phoenix is OK. And the grief is gone.