When my daughter Sarah was born and officially received the diagnosis of Apert syndrome two weeks later, I hated everything about it. I was enraged that our family was permanently altered by something we didn’t understand, a condition that baffled even the medical community.
Daily, I’d look at Sarah and sob to myself. When she was born, I was thrust into a world of advocacy for my daughter, as I heard terms like “disabled” and “genetic mutation.” It’s not far-fetched to claim that what tore open my heart — shredded it — those early days was, in fact, grief. I mourned the daughter I imagined Sarah would be, grieved the life I thought we’d have and the life I wanted her to enjoy.
Nothing has been the same since Apert made its unwelcome debut into our family. This does not mean I don’t feel flutters of sheer joy or moments of great hope; I do. The prayers I once offered for Sarah’s healing have transformed into utterances of acceptance, to surrender to the mystery of it all. I can’t say my emotions remain stagnant as acceptance, joy, or grief, but rather, they all seem to mingle together in a subtle presence I always carry with me.
I’ve discovered, the older I get, that life is really lived when it is experienced as a conglomerate of complexity mixed with the simple pleasures of every day. Apert syndrome — or, more accurately, Sarah — has taught me this. I think it’s because life as a caregiver to a child who is medically complicated affords me no extraneous time. Time is not a commodity, something I can squander anymore with gossip or daydreaming. Instead, time is a fragile gift of which I am constantly aware. There is an appreciation for Sarah’s life and my own, because we live on the edge of life and death every day.
There is no guarantee of tomorrow or longevity of life for Sarah or any of us, so I allow myself to embrace the moment and its riches, even if that entails processing my frustration and overwhelm or indulging in a good, healing cry. Often, it includes spontaneous dancing or hearty laughter at Sarah’s natural mirth and wit.
We are not like other families, and for this I also grieve. That no family is the same grants me some small comfort, because I know there are common elements we all share and feel, and this brings such relief to a heart that is bone-weary most days. The reality that no one is truly alone draws me out from under the dark cloud and keeps me searching for the sunshine. At least I know that to move forward is the only path to peace, to growth, to compassion.
So, I carry onward. But I do so with a keen sense that my life and experience as a mom-caregiver is meant for more than just my own edification and discovery. The drive to impact others by encouraging them along their journey and in their own suffering is both an honor and a duty.
Maybe Apert syndrome was meant to pull me away from my former comfortable life and into the depths of others’ pain. When I see Sarah, I do not see a syndrome or a condition or a diagnosis. I see a child whose eyes sparkle with wonder each day, a daughter whose smile shines in a bleak world, whose cheerful greetings to strangers uplift them from their own burdens. This realization is both a mentor and a guide, not really to Sarah (yet), but to me. It’s why I honestly acknowledge the struggles of living with Apert syndrome in our family, yet attest to the moments of joy and normalcy that often break through to offer a reprieve from the gloom and uncertainty.
To me, life is a pilgrimage, and we are all sojourners just trying to find our way through the ups and downs. Why, then, would I refrain from accompanying another person limping along their own path, just like I am? If we meet, we gain strength of character and just might move in the same direction.