The sum of the parts

Grace is adopted from China. So is her big sister Rita. Being Chinese is a part of who they are. We are quite proud of our girls and their heritage. We are so blessed that they have graced our lives. They are our daughters.

Grace is an epileptic. This is part of who she is. It means that she gets seizures. It means that she has had many, many visits to the Emergency Room - most of which start with a call to 911 and an ambulance ride. It means that she has had so many IV lines and blood draws that her veins are now so scarred that accessing them is anything but simple. It means that we watch her very closely. It means that she takes multiple medicines, multiple times a day. It means that we all struggle to keep her on this diet to hopefully prevent future seizures or to at least lessen their impact when they do hit.

However, none of these things define Grace on their own. She is a funny, vivacious, caring, stubborn, loving, imaginative child who happens to be Chinese, an adoptee and an epileptic. She is so much more than this pervasive chronic disease.

Grace's neurologist is a wonderful man. We all love him. He sees Grace as a child first, a patient and as an afterthought that she is adopted. Last summer, Grace was tested for a sodium channel mutation. The results were positive for a SCN1A genetic mutation. The diagnosis of that is Dravet's syndrome. This is a severe, hard to control with medication form of epilepsy. As her doctor likely does with most patients' parents that he delivers news of a genetic mutation, he recommended that we go for genetic testing to see if we are carriers. And then, he stopped himself, looked slightly embaressed and said nevermind. He just remembered that Grace is adopted and despite everything we share, we do not share the same genetics. I love that this was an afterthough to him. The fact that Grace is adopted does not define her to him; he doesn't even think about it.

I have had to laugh at Tom from time to time (OK a lot of times!). When we were in an emergency room in Florida one time with Grace, a doctor asked where Grace was from and Tom replied Pennsylvania. A very natural response to a common question. The doctor paused for a moment and then asked if she was adopted.

One of my biggest fears for Grace is that she will be defined by one label or another. That someone will take one facet of who she is and limit their perception of her to this one thing. Our tiny, sweet, little girls is made up of so many wonderful parts. They all combine to make her who she is. She is Grace.