It has been almost 10 years since my first visit to the Cleveland Clinic, when we first and finally found a diagnosis for my daughter Zoe. Less than two years later, we returned to discover that Zoe's big sister had the same metabolic disorder. That is when the scientific study of genetic medicine made my decision for me, I would have no more babies.
We never planned to have more kids, but we were so happy as a family, we never really planned not to. My husband was 50 when our first daughter was born, and he was thrilled to be a first-time father. He rushed home from work to hug and hold his kids and held back from his hobbies to hang around with his girls. He wore tiaras perched atop his short gray hair, learned how to dress baby dolls on demand and the names of all the Disney Princesses. And even with the health issues, sleepless nights and hospital stays, we made a happy home for our little family. And along the way, I hid the hurt in my heart over not having a son.
I was 32 when our first daughter was born. And over the years I have pushed away the pain of knowing I wouldn't hold another baby that we made, that I really couldn't, even if I wanted to -- because given the circumstances, it just wouldn't be fair.
In the beginning I would look into the eyes of my infant, tucked tight against my chest and I would think I made this baby, and sigh a contented sigh. And now, as the young childhood years of perpetual motion have finally transitioned into curling up on the couch with my girls, my truest moments of introspection have arrived.
I review my own checklist of good mothering designed for my daughters: Am I meeting her needs? I wonder. Is she happy? Am I dividing my love, my attention, my care as equally as I can? And when I have completed my own report card, I get back to studying my girls again. The copper penny color and curl of my girl's hair, something my older daughter most likely inherited from her grandmother. Zoe's never-ending smile and good nature, how long their bodies are now and how fast they grow. When I am done marveling over all that is good, I sometimes think about the son I never had and I think about all the other mothers of children affected by genetic disorders and I wonder if their awe-filled moments have shifted like mine do.
Do they sometimes feel the flash of pain? That deep, maternal ache that comes when you realize that your child's life might be threatened, that underlying fear that all mothers feel? That someday your child might experience physical pain that you can't prevent? That your child has not only inherited from you the color of their eyes, their hair and the shape of their body, but also a disease that may cause them hurt? A disease their children may inherit. A disease you knew nothing about.
And when those quiet moments come, first I find my happiness, my thanksgiving, but these good thoughts share the space in my heart with a sliver of pain. Because even when Zoe's arms are around me, and her " I love you" is still floating through the air, instinctively, I gather her in, wanting to protect her from harm.
And because the burden of genetic disease is great, I hold her, so very tight and I think, I made this baby.
This post originally appeared on Special Needs Mom in conjunction with Rare Disease Day, February 28th, 2014