Every mother has this moment. The first moment of awe usually comes when the pink bundle of wrinkled, soft skin is placed in your arms. As you gaze into your baby's eyes for the first time, you are thinking... I made this baby. These awe filled moments continue as you watch your child grow.
For me these moments come at quiet times. Unexpectantly when suddenly the perpetual motion of young childhood may pause and you find your child sitting still in your lap or curled up on the couch asleep. For me these moments are filled with great introspection.
I review my own checklist of good mothering.. Am I meeting her needs? Is she happy? Stimulated? Flourishing? When I look to Olivia at these moments I ask myself-Am I giving her enough attention, balancing her needs with those of her sister's? I marvel at her beauty, her intellect, her spirit. And then, I thank God that Olivia is healthy. That she isn't affected by the same disease that has shaped her younger sister's development, and that she is able to teach her sister all that she can.
But that has changed now and my thoughts are suddenly different. They are deep and dramatic and so maternal that unless you are a mother, you may not even understand.
Recent changes with Olivia led me to have her tested for the genetic disease, mitochondrial disease, that affects her sister Zoe. The tests were definitive. Olivia has mitochondrial disease too. This means that her body's ability to produce energy is impaired. More tests are pending, but at this point we assume that she is most likely mildly affected compared to the severity of her sisters issues.
I now, am so curious about other mothers of children affected by genetic diseases. I wonder if their awe filled moments shift from time to time, as mine do. If they ever have these flashes when they look at their children- affected in different ways at different times- and feel pain. That deep, maternal ache when you realize that your child's life may be changed or threatened. That your child may experience physical pain or discomfort sometime in their life. That this child has not only inherited from you the color of their eyes, hair and the shape of their body, but also a disease that may cause them harm. A disease their children may inherit. A disease you knew nothing about.
Now, when those quiet awe-filled moments occur as I look at that child of mine. I still find happiness and thanksgiving, but there is also something new. A sliver of guilt. As a mother it is instinctive to protect my child from harm. But the burden of a genetic disease is great. I hold my child and I think... I made this baby.