I remember when my husband and I decided to try for a second child. I wanted to have our children close together – have both in diapers – to power through this phase and be able to get back to work as soon as possible. I got pregnant quickly and breezed through doctor appointments, feeling like a pro the second time around. When asked if I wanted to have an amnio, I declined. I had no interest in terminating my pregnancy. My husband and I had a quick conversation, maybe while we unloaded groceries or prepped our dinner, but it was a decision that has anchored me and a decision that I come back to often for reassurance and support when the challenges feel burdensome.
When our second son was born, I had a beautiful labor, just the way I had imagined labor for all of three of my children. I was in the bathtub for most of the labor until my midwife told me it was time to deliver. Eight minutes later out came our boy. His Apgar’s were 8 and 9s, just like our eldest boy; and, he nursed right away. When they took him a few feet away from me to look him over, however, the doctor blurted out, “I think he has Down syndrome. I’m not 100% sure, but I’m 98% sure.” She said we’d know for sure in eight days after blood tests. She fled the room to perform a C-section, leaving the midwife, my husband, our nurse and me in the room. Stunned. Shocked. Silent. I went back to nursing my son and investigated his body. I remember asking my husband, "What is Down syndrome again?" Neither one of us had a family member with a genetic abnormality nor had I recalled ever meeting a person with this genetic condition before. My instinct was to protect and to hold my son closer. But, at the same time, my ignorance and fear caused me to want to push him away.
This information felt scary. The future felt uncertain and raising him in our community and world felt, well, dreadful. I called my mom, who was watching our eldest. We called the rest of the family and some close friends. I went through the motions, sent out the obligatory mass email; my neighbor started the food train. I wanted to get out of the hospital as quickly as possible, but first I had to sign a waiver declining to see the social worker who had information for us about our child’s condition and who would let us know how we could put our child up for adoption. I didn’t know then what this genetic condition and the subsequent medical and developmental challenges would mean for my son, for me, for our family. But, I knew this: he was ours and we were his.
In my life, I’ve always been up for a challenge. I love solving problems. But the challenge of parenting my son with developmental differences has been unlike any prior experience. Mostly, I think this is true because, historically I’ve been more interested in the destination than in the journey. To me, the purpose of a trip is to get from Point A to Point B, taking the easiest, most efficient route. There is nothing efficient about parenting my son – we arrive at the destinations slowly and usually we forge our own path, travelling a route without footprints to guide us. But, along the way, I’ve found joy in this journey. I’ve learned how to pause; to take in the environment around me; to rest and take care of myself; to marvel at human development; to be patient; to give myself permission to feel deep sadness (yes, there can be joy in sadness); to meet amazing, beautiful souls in the form of other parents, therapists, caretakers, teachers, strangers; and, perhaps most notable, I’ve learned to follow my son, rather than to lead. As parents, we traditionally see ourselves in the role of teacher to our children, but with my middle son, he has been my teacher throughout most of our lives together.
There’s a quote I love: It is not the challenges that define us, but how we respond to those challenges. I’m proud of how I have responded to this particular challenge. And, I hope that my son knows one day how he has strengthened my character, made me a better person, and given me a depth, a strength, a resilience, a capacity to love, that I didn’t know was possible.