I’m tired and there’s dirt under my fingernails from digging in the soil. Even though it is winter the neglected garden needed weeding. Most of the boxes have been unpacked and except for a few things (like three gilt frames, some spoons and the washing pegs) everything has been accounted for. Our stuff fits into this old house like it has been built just for us. The views from the dining room and our bedrooms are spectacular. The days are warm and I got a lot done with my mother here. The children seems calm and even though Dirk works twelve-hour days and we only see him at mealtimes, he seems cheerful and upbeat.
Ever since the books have been unpacked, one in particular has been calling me: Roadmap by Jennifer Graf Groneberg. I received it a day or so before we were due to move from the city into the countryside and despite the urgency of getting everything sorted out, I started reading it. But I couldn’t finish it, of course. When I finally did finish it, I was at a loss for words. I needed to mull it over.
I remember reading something by Jennifer back when I returned to work from maternity leave with Loren. Everything was so uncertain and I felt so deeply wounded. So, when I read about her house at the end of a gravel road in Montana where she closed the gates after getting home with the twins, something stirred inside me. And then, a couple of months later I read another column written by her and I re-read it, simply because it was so musical. I immediately searched for anything written by her and spend almost a full day reading and re-reading everything I could find. I stuffed myself with the beauty of her words and I cried like I haven’t been able to for months. I think what ultimately grabbed me, aside from the beauty of her writing was that I sensed in her the kind of peace that I knew I was lacking. An acceptance of a son whom I didn’t know I needed in my life.
Peace roams only where it is invited. And maybe Jennifer’s book is telling this story more than anything.
What was my first awareness of Down syndrome? Mythical heaven’s children – perpetually smiling. A TV program with a young actor with Down syndrome. Later a childhood friend whose first child had Down syndrome. The grandparents were devastated. At that stage this seemed a normal reaction to me. But this lovely young mother was so proud of her son’s achievements and she was such an advocate for Down syndrome that I was left with a sense of delighted surprise. What her attitude brought home to me was that a child with Down syndrome will do most things other kids do eventually. He or she may just get to it at a different pace. But I didn’t see that the parent of a child with Down syndrome also evolve along the way. That sometimes, children are far better teachers than adults. And that children are each gifted in their own way. That every child brings something to this world that this world desperately needs.
Infertility made me realize that nothing is a given. If my body could fail me at something as basic as reproduction, it could also give me a child other than the norm. And then there was my realization while pregnant with Marco that I wanted nothing to do with prenatal testing. That I would welcome my child no matter what. Though imperfect as yet, all of these things paved the way for Loren. When Loren was born, there was no doubt in my mind that I would look after him forever if necessary. That he was mine and that I wanted him with me. But, I didn’t know how to forgive myself and just enjoy my child.
“We don’t know what his intellectual capacity will be” the less-than-kindly doctor said. “He may be like a little Downs kid (sic) or he may never even recognize you or say Mama.” And I thought, I can live with Down syndrome. Please, God, let him be like a child with Down syndrome.
I wanted so desperately to be sure of something. To label. To understand. The richness of the experience of being a parent was still only half known to me. Whether Loren had Down syndrome or CP or was physically and/or intellectually disabled, didn’t matter in the end. Nobody could tell me that he’d always know me and that he would love me. Despite all the things he needed to forgive me for. Nobody could tell me that love would be the main emotion I would experience.
And then Jennifer and Jodi and all the other parents with children with Down syndrome, liver disease, Cerebral Palsy, autism and a myriad other things exploded into my life and I knew that this new life of mine was doable. Loren showed me the way, when I finally allowed him to. But there to hold my hand with shared experiences were all these parents and their wonderful, miraculous, sweet, naughty, problematic, stubborn, fighting, laughing children.
And this, for me, is the basic message of Jennifer’s book. Life is to be embraced. Children are there to be loved and if you allow them to love you right back, everything will be fine.
“Ahluvyou”
I read a few passages from the book to my mother and we sat huddled together, crying softly. We cried, I think, about forgiveness and miracles and the incredible privilege of being mothers, but mostly about the sheer beauty of it all.
Not for the first time and neither for the last time, thank you Jennifer.
