I think as a parent of a child with Down Syndrome, a condition where over 90% of prenatally diagnosed cases are terminated, there is this sense that to say anything negative about our parenting experience could literally be putting lives at risk. Is it worth sharing the not so great parts?
There are a few reasons I keep this blog. One reason is to keep family and friends updated on the boys, another is to meet other parents who have children with Down Syndrome (we are quite the on-line community, wouldn't you say?). I keep it because it is a great way to preserve memories for the Charlie and Calvin. And last, I keep it because I hope that in some way it can help new parents of children with Down Syndrome.
My desire is to honestly share my experiences as a mother of two boys, one genetically different than most. I want people to see that we are just a regular family. That we do normal things. That our lives are not negatively impacted by Down Syndrome.
Our lives are richer for that tiny little chromosome. That extra 21.
But, today I will say it. I will confess that there are times that I wonder. I wonder what life would be like with two 'regular' kids.
I had this idea of motherhood before Charlie. I had visions of warm home-made bread, of clothes drying on the line. Cloth diapers and long walks in the forest. I had ideas of a tidier home, and a hot meal every night. Ideas of going to the park and watching the kids play on the jungle gym.
I don't mourn Charlie having Down Syndrome anymore. Down Syndrome is simply a part of Charlie I would never want to give up. But here and there, I will admit, I mourn the loss of a more regular life.
With a child with a disability there is so much emphasis on therapy, learning, development, health issues... Charlie is 3 years old now. He is in preschool! Where did the time go? Where is the laundry that was supposed to be hanging to dry? Where's the homemade bread and yogurt? What happened to mornings spent outside in the garden, dark soil squishing between baby toes? Where is that simple life?
Truth is, it was washed away in hours of therapy. It was burnt up driving to appointments. It was avoided for the sake of a child who cannot, even and age three, safely play on a jungle gym alone, or be trusted not to run into the street when spending time in the garden. It was set aside when the cloth diapers proved too bulky for him to learn to roll, crawl, or walk in.
I miss that ideal life sometimes. More so now that Charlie is in preschool 4 days a week, and Calvin and I have more time to ourselves. I see Calvin doing all these things at the tender age of 1. All these amazing baby things and I think how easy it is to simply guide a child's development as it unfolds rather than coax, prod, will it to come forth.
He's catching him, you know. Calvin is catching up to Charlie.
It is a different life we have. It is not what I had envisioned.
We've adapted. We've created something small and beautiful and wholly ours. It was a wise woman who once told me "There is more than one way to have a good life." She's right, you know.
It's just sometimes... sometimes those old ideas, those coveted ideals, they crop up and nip at the edges of your heart. They threaten to plague you with guilt for not having it all.
I'll be okay tomorrow. Tonight I just had to share.