I came across the book, The Year My Son and I Were Born: A Story of Down Syndrome, Motherhood, and Self-Discovery by Kathryn Lynard Soper by circumstance, when my son Blake was born. I had a traumatic birth experience, traumatic post birth experience, and a possibility of a diagnosis that my son had Down Syndrome. I was lost, terrified, sad and quite frankly devastated.
I was in the dark, along with my husband trying to navigate a whole new world that I have never seen and have only had limited contact with through the course of my life. I was berated with the political correct and generic statements people were saying when they don't know what to say .. "They are the most loving people", "Children with DS are god's angels" - Blah, Blah, Blah. I appreciated the sentiment but was irritated at every turn when my congratulations turned into scared faces and "I'm so sorry".
I felt patronized by the social worker that was sent to me and stunned at the prospect of a life with a boy with a "disability" the extent to which I will not know until he grows. I needed someone, anyone who was in my situation to talk to or to listen to. I am an information seeker by nature and craved all information that I could find. I was confined, however to a hospital room with a lame Blackberry device. I came across Kathryn's book and after I read a review with the words "Brutally Honest" I downloaded a copy to my Kindle immediately. I spent every spare moment reading it and basked in the experiences and feelings I could relate too. I slowly began to awake from my fear coma. That whole period of time seems like a blur but this book still stands out in my mind. I have also read the two other books she published as well. A collection of essays titled: Gifts and Gifts II. Complied from parents who have children with Down Syndrome.
I had the pleasure of chatting with Kathryn about her book and life recently.
LG: What made you decide to share your experiences with the world?
KLS: Sharing your inner landscape is a risky endeavor, but the rewards can be tremendous, especially when a reader says, “I thought I was the only one who felt this way. Thank you for showing me that I’m not alone.”
I think the hardest part of being human isn’t the inevitable pain we go through, but the suffering we create by rejecting ourselves when we’re in pain. When we need gentleness and kindness and community the most is when we’re most prone to be harsh with ourselves and isolate ourselves from others. So I believe there’s a lot of grace to be found in writing about the hard things. For me it’s a way to process the raw material of my experience and find meaning in it, and come to terms with the shadowy parts of myself that hard times tend to reveal. Just as importantly, sharing with an audience is a way to connect with fellow travelers, to feel the power that comes in vulnerability, and to discover, over and over, that one of the greatest gifts we have is our capacity for compassion.
LG: How is your doing son now? tell us about him?
KLS: Thomas just turned eight and he is one of the funniest, smartest, coolest kids I’ve ever met. In addition to T21 he has a diagnosis of PDD-NOS (an autism spectrum disorder) and an auditory processing disorder. He has yet to say a word, but he communicates very clearly nonetheless. I’m beginning to think that symbolic language is overrated. He’s in second grade at a beautiful school in our district for kids with multiple and severe disabilities, and I only wish all of my other kids could have the attentive, personalized education that he participates in every school day. He’s pretty much everyone’s favorite around here, although HIS favorite person is his definitely his dad.
LG: What is the most important thing you have learned by being a mother of a child with Down Syndrome?
KLS: I’ve learned, and I’m still learning, that love has nothing to do with how many positive adjectives I can reel off about Thomas or any of my kids. Thomas is truly funny and smart and cool, but even if he wasn’t, he would be utterly loveable. People don’t need to do anything to be loveable. They don’t need to accomplish anything other than breathing. Heck, even breathing is optional. And learning that about my kids has helped me begin to accept the same truth about myself.
LG: What advice would you give new parents?
KLS: Every chance I get, I encourage new parents to let their experience be what it is. There are new parents who weep because they don’t know if they will ever be able to love this child. There are new parents who weep because they didn’t realize it was possible to feel the kind of love they feel. There are parents who weep because they carry both of those realities within them at the same time. There are new parents who don’t weep at all. And there is every possible combination in between.
You don’t have to feel bad about being sad. You don’t have to feel bad about being happy. Your experience is as unique and legitimate as that little baby that just turned your life inside out. Or made it all come together.
My sincere gratitude to Kathryn for sharing her story and helping to give me the courage to face mine.
Kathryn currently lives in Utah with her beautiful family!
