|What used to be|
I could spend a lot of time analyzing John’s behavior – certainly after a year of graduate level social work there are many diagnoses as well an interventions I could suggest, but I will not. In the end, what John did and for whatever reasons are private and I will not bash him in this very public forum. Actually I am quite surprised I am even writing this, but you see I have experience with grief, particularly as it relates to readjusting your dreams.When Alex was born I grieved for our future. The following is from the first chapter of our book “From Grief to Celebration, How One Family Learned to Embrace the Gift of Down Syndrome”.
Grief is a natural process, and I believe the way we learn to accept and embrace the unexpected. We did not know Alex was going to have Down syndrome nor did we know very much about Down syndrome. As with any unanticipated event in our lives this period of adjustment was necessary for John, me and our family.I now know what we experienced was the grieving process, and admittedly for the first few hours it was about us and the “why and how”. Why did Alex have Down syndrome? Why did this happen to us? How can we tell our families, who were so excited about the prospect of another baby, that ours was different? How do we share our sadness, but still try to put on a happy face? Why, why, how, how, it was almost as if we felt sorry for ourselves.
And here I am almost 21 years later reliving those feelings over and over again. But unlike 21 years ago my grief has not subsided in six weeks, it has ebbed and flowed. My sadness changes with the weather and my kids. Some days are really great and some days I am so consumed by my sadness, my kids’ sadness and failure I can not function.John called my oldest and youngest at college, in between classes, minutes after he called me and shared the same story with them. He told me was too scared to call Alex and needed me to help him. Here I will be judgmental – all our kids deserve the same respect Alex was shown and my son is suffering tremendously from this. I feel like sometimes we can not escape this darkness.
However, I know I will escape the darkness and I know my kids will all be fine. I have lived this before, and learned how the birth of a child with Down syndrome became a life of happiness, joy and love. From Alex we learned what life can be when you realize that your path is different than you thought, when you embrace change and trust in your higher power. Grief is only a flicker in time, and although it seems like an eternity, it will lift and the world will be full of light. My kids will be happy and healthy, I will grow old with them and their kids and I will feel completely fulfilled. And this is what keeps me going on the darkest days until I can remember my marriage and husband as successes not failures.My family, friends and kids have been kind, and there beside me. When Alex was born I did not know how to tell the world, and gradually day by day let people know. In the end I wrote a letter to everyone and the outpouring of love and support fueled me for the days and nights ahead. And today 20 years and nine months later I share again.
My family is not broken. I am not broken and my kids are not broken, we are merely different.