Traveling the Same Pathway
Updated: Mar 6
Grief is the overriding feeling that surfaces when I reflect on my experience of the first four years of motherhood, before I learned of - and began to understand the why behind - T's differences and special needs. This may be surprising because my child is alive, physically healthy, and living under my roof, with me and his father, to whom I am happily married. My son did not die prematurely, suffer great injury, or inherit a chronic illness. All his limbs are present and functional, he has two eyes that see, ears that hear. And therefore this grief feels shameful and indulgent, not to be uttered aloud beyond the confines of a therapist's office or in the quiet darkness of my bedroom, when impending sleep has dulled my emotional guardrails.
But when I begin to question my own sadness, I remember this quote from the preface to the book, Sensational Kids, which provided some salve to the wound when I stumbled across it,
"But what happens when a developmental problem interrupts the natural flow of parental and child connection? What if, despite your best efforts your baby is never happy? What if when you hold your baby he arches away from you... not once, not twice... but every time?" (xxvi)
And I realize that it is the every time that has so deeply wounded me. That until I had a second, typically-developing son, I never had the opportunity to learn the way it feels to have your baby sleep on your chest, your child turn towards you for a spontaneous embrace or a moment of cheek against cheek. How it feels when your baby responds with a calmed demeanor to your soothing voice or touch.
I spent four years without the ability to soothe my son. With no understanding or insight into why the things I did - hugs, caresses, games, songs, toys - were at best ineffective, and at worst, caused him agony. And we lost (or never fully developed) the natural attachment between mother and son, the rupture beginning with and taking deep roots in the first four months of his life, when as an infant, he screamed without stopping, without sleeping, without remedy. This rupture consolidated in the subsequent years when the greatest indicator of our parental "success" was simply the absence of screaming and that he was meeting his growth milestones at the pediatrician's office. And these years felt like failure, and drudgery, and most of the time, my husband and I, dreaded spending time with our son. This was a terrible secret, hidden sometimes even from each other, and we berated ourselves silently, wondering how we had failed so profoundly in the most human of endeavors.
When T's diagnosis cracked open a window into this grief, and light started to flood in, both my husband and I finally began to understand why that primal connection had been frayed and then ultimately broken last summer. And we started to see a way forward, to help our son develop, feel joy, and for us to rebuild attachment. But there was still a period of love, that was lost.
I recently visited an inclusive church service in my new small town, and the pastor who organizes that service gave me this book, Healing After Loss. When she handed it to me, I felt seen. That I didn't have to explain or justify my grief. I opened the book to that Sunday's date, January 26th, and the daily meditation was the following:
"To help another is to forget, for a few moments at least, one's own primary consuming need. We gain a little perspective in knowing we're not the only one. And having a similar need, we understand one another, are bonded together in ways that only those who have traveled the same pathway can be.
We don't need to explain ourselves. The other knows. He or she has been there. Initially, in these pairing we will be the needier. Someone who has been there can be our guide, our hope-inducing model.
Then after a while, we will take our turn as the guide. But even then, the sorrow that lingers will lesson as we bring the life-giving hope to another. See I made it through, so can you."
And so I will say to you, if you feel grief because parenthood has gone off the rails for you, you aren't alone. And this is true even if your child is here, in front of you, breathing, and maybe even laughing and thriving now. May you travel this pathway accompanied and with self-compassion.
Ps. Looking forward to reading this book, Not What I Expected: Hope and Help for Parents of Atypical Children.