At the end of Thanksgiving vacation, I was weary from travel and a week-long holiday gathering with the in-laws. It was the first time my daughters were meeting their aunties, and while it was a nice visit, we were ready to be home. Just as the plane was landing in our home state of Vermont, a stranger across the aisle made a comment about the little child I was holding against my chest. It’s one of those stock comments that strangers make often when they see Sylvie—that she looks tired. But Sylvie has a rare and degenerative neurological disorder that has left her hypotonic, nonverbal, and unable to hold her head up. She has a cherub face, and most of the times her eyes are wide open and clear. But if you don’t know this, I suppose it’s understandable that you think my little child is tired. But on this particular trip, after traveling from Florida to Vermont with my family, I just was too tired to let the comment go and smile. Instead, I said to the horror of the woman across from me, “No, she’s not tired. My daughter is terminally ill.” It was not necessarily a highlight of my parenting journey, but sometimes I just need to voice the daily reality I am faced with. And sometimes those realities do not include niceties. The woman tried to apologize and tell us how lucky our daughter was to have us as (not that she knows us from a serial killer), but her embarrassment and apologies were not of interest to me at the moment. I just wanted to get my girls home and sleep in our own beds again.
This post-Thanksgiving interaction sort of threw me into a pre-Christmas funk. My twin daughters are going to turn four years old at the end of January 2010. With November came a flood of memories of being pregnant with them—so full with babies, I rarely saw my knees nor could I fully enjoy the traditional edible Thanksgiving delights. By December, I became a non-compliant patient and got off bed rest and began walking around town like a bloated whale, eager to welcome my new twins into the world. By January 2006, I was the mother of two gorgeous, vibrant and loud baby girls. My partner and I were blissed out in a sleep-deprived first-parent kind of daze that lasted almost 10 months. Fast forward two years later, and by January 2008 we finally got the devastating news that our little Sylvie had a leukodystrophy—a degenerative disorder that affects the myelin sheath of the nervous system. Only 1 in a million people get Sylvie’s brand of this disease; it’s the kind of odds you wish you had if you played the Tri-State lottery, but not the kind of luck you want when it comes to your child’s health.
Hence just as the months became their darkest, I was flooded with earlier memories of all the hopes and dreams of being a mom of twins. Christmas time is already a relatively sentimentalized time for many of us, but for me it was compounded with becoming a parent, finding out that my daughter was severely ill, and knowing that in the near future, I will most likely be haunted by recollections of once having two living daughters instead of one. The “anticipatory grief” of losing my daughter sometimes weighs so heavy on my mind and soul that it is easy to forget to live in the present moment. I first heard this term—“anticipatory grief”—from the wife of a military chaplain. Her husband was sent off to the Middle East, and she would cry for days from the prospect of her husband never returning home alive. When I spoke with this very mindful woman, the experience of anticipatory grief resonated with me as someone who is parenting a child with a disability. Not knowing when or how our children will or will not thrive is incredibly unnerving, even for those who are not met with daily medical challenges such as Sylvie’s. Yet, the prospect of losing a child can become an all consuming preoccupation that clouds our daily activities and drains us of any creative attention we may have to give. But it is only one way of moving through the world. While easier said than done, living a state of constant anticipatory grief is of little use to anyone, including Sylvie’s twin sister.
My wise and patient partner recently reminded me that it was important that as parents we have some control over what type of memories we make. While it is likely we will outlive our daughter, Sylvie, we can still live a life that will allow us to look back, not with longing, but with fondness and satisfaction that we parented as best as we could given the circumstances we were handed. This Christmas and New Year was one of the most joyous holidays I can remember. We just moved into a new house in a fabulous town that we love. Decorating our Christmas tree was magical with two 3-year olds in the house. Sylvie’s therapy chair was situated in front of the tree as we adorned it with lights and ornaments; the girl can’t talk, but her eyes, coos, and smile sure tell us a lot about the joy she is experiencing. We began our own family holiday rituals, sang songs, and baked & ate way more chocolate and cookies than anyone should consume. Watching Sylvie and her twin sister enjoying the charm of Christmas made me slow down and truly appreciate how precious life can be. This all sounds so trite and cliché as I write this now, but with the winter solstice came a light and grace I hope to hold onto. As the days get longer and brighter, my anticipatory grief became replaced with a cautionary hope. I’m wishing for medical miracles for Sylvie that she may live longer, or one day talk, walk or at least sit up by herself again. But more importantly, I am hopeful that even in the midst of this unexpected parenting journey, Sylvie’s twin sister will have joyful memories of a family that loved her and her sister deeply. We will not grieve that we did not love enough.
This New Year we have no resolutions other than to continue to settle into a life of grace and gratitude. Our family has much to be thankful for, and while it’s easy to focus on the lousy circumstances of Sylvie’s genetics, it would behoove me to note that we have sources of pleasure and wonder too. Since we’ve moved back to Vermont, we have established an amazing team of care providers for our daughter(s). We have an array of thoughtful and respectful service providers who advocate for Sylvie, and our pediatrician convenes us four times a year to coordinate Sylvie’s care. On more than one occasion, many of friends, colleagues, and family have voluntarily donated financial support to our family to pay for Sylvie’s care. I got a card of warm wishes from a woman who once gave me a manicure in Minneapolis, Minnesota (and her husband is struggling with some rare kidney disease)! We’ve received cards, gifts and prayers from people we don’t even know wishing us strength. So happy New Year 2010! I don’t think our family can endure many more surprises or challenges; let’s hope this is a quiet and peaceful year. And if not, may we continue to have the strength, humor and love to carry us through to the next stage of this wacky parental ride.
Kirsten Isgro is a professor of Communication Studies at the State University of New York. This is her first entry on Hopeful Parents.