In a few days, I had educated myself in as many ways as I knew how to about Down Syndrome. I knew this education was just beginning, but my head was sore from the sheer volume of knowledge I’d gained in such a short time. I didn’t know it, but my head had run ahead of my soul.
I love this parable.
“There was once an American traveler who planned a safari to Africa. He was that typical Type-A American tourist, who many of us may be and who I admittedly am when I travel. We do our research about this travel destination and we have a timetable, maps, and a clear agenda of the things we need to see and do. Some local people had even been hired to carry some of the traveler’s supplies as they trekked throughout the land—it was that level of planning.
On the first morning, they all woke up early and traveled fast and covered a great distance. The second morning was the same—woke up early, traveled fast, and traveled far. Third morning, same thing. But on the fourth morning, the local hired help refused to move. Instead, they sat by a tree in the shade well into the morning. The American traveler became incensed and irate and said to his translator, “This is a waste of valuable time. Can someone tell me what’s going on here?” The translator looked at him and calmly answered, “They’re waiting for their souls to catch up with their bodies.”
(Terry Hershey, Sacred Necessities: Gifts for Living with Passion, Purpose, and Grace, 68-69)
In my quest to fill in a few more blanks, in the countless blanks I had about what my life as a mother of a baby with Down Syndrome looked like, I headed to the library. I adore libraries. They possess such a magical feeling of hidden knowledge stashed into each book. And shelf upon aisle upon section holds more riches than could ever be calculated by mere observation. And I had found my way to the particular shelf which promised to offer me the insight I saught.
There were 3 books on the shelf that correlated to Down Syndrome. I had already read 2 of them. Surprised by this, I gave the greater isle my scattered attention and noticed that the 3 books I’d found were amongst numerous books on Autism, Disability and many other behavioural diagnosis. And as I looked back at the books I recognized, I froze up.
I imagine my soul would have spoken up at some other point, if not in this aisle at the library. Either way, I would not have been ready for it. I looked down at Madeleine who was observing the shelves for herself, from the akward angle of her stroller. A sickening feeling began to creep up my spine and I immediately wanted to escape. I looked once more at the variety of books this isle offered and my soul expressed to my searching self what it really felt, “I wish I had no reason to be standing here.”
I’ve often found it challenging to embrace my true emotions when they sit in conflict with how I want to feel. In this case, I wanted to feel educated, positive and entirely confident that this story was going to be a wonderful one, with purpose and meaning tucked into each new chapter. And moreso, I wanted to feel that I was unmarked by disappointment. A religious filter influenced this stance- afterall, how could I feel sad about something God had created?
The books I’d read by mothers who have walked this road had all encouraged me to grieve the child I thought I was having, in order to embrace new expectations of the baby I would have. But I thought that was advice for sissies or particularly emotional women. Ha! Not me. I was afraid to acknowledge my own vulnerability. I feared that tangled up in my raw truths, was the honest wish that my baby would not have Down Syndrome. And as I stood in the library, hearing the sounds of hushed motion around me, I felt my soul catch up with my mind and I rallied Madeleine in the stroller towards the doors…..praying my little one inside would not hear the sound of me rejecting her.
My heart broke that night. I felt off all day until Russ came home. I was short with him and offered no warmth, instead, avoidance. When the dishes were done and Madeleine was bathed and nearly asleep, we met each other on the couch….and his inquisitive gaze unlocked the floodgates.
“I realized today, that I don’t want to have a baby with Down Syndrome. I feel aweful.” As my tears fell and the Kleenex box emptied, wave after wave of emotion was unleashed. I was grieving. The denial phase had ended…I was in new territory again.
I don’t know any expecting mother who hopes or wishes that her baby will have Down Syndrome. The mothers who have traversed this hormonal, heart-broken, helter-skelter adustment to a Down Syndrome diagnosis, are wise and humble. I had no choice but to embrace this overwhelming grief. Not because our baby had Down Syndrome…but because the baby I thought I was having, was no longer.