10/14/16
Every conversation I have about Talia ends the same way: there's nothing to say, there's nothing anyone can do to take the suck away from the facts. In the process of telling all of my friends I've heard the wind get knocked out of their lungs and the tears come to their eyes. In most of those conversations it's me doing the comforting of them, and I'm ok with that. This diagnosis affects everyone who I come in contact with. It shatters the illusion that we have any control in this world. Of course it's directly happening to me and my immediate family, but even those on the sidelines are entitled to their feelings. I am ok sharing my experience and my grief. The typical response is where the words sink in for a few seconds and then the people start crying or staring in shock (a smaller version of what my own face looked like). Many people then ask to hold Talia. This is my favorite response- Can I hold her? It's like saying "Can I bestow some love upon her while she's here". It's those moments that make me feel least alone and most connected to both my community, and to my daughter.
After the reveal conversation however, I don't always make it easy for others to talk to me about Talia. I talk about her death in the same way I talk about many topics, with an attempt at humor and a sarcasm that at first glance makes it seem like I'm not taking her condition seriously. Then at other times I'm just sad, deeply sad about the whole situation. It's not fair, that's obvious. Many families go through experiences that are not "fair". I could dwell in my anger over the false negative genetic test or I could get sucked down by the depth of sadness that clearly exists in the situation, but the only person that hurts in me and my family. Audrey and Nathan have such joy inside them, they need to see the joy inside me. When I'm with them, mostly that joy is genuine, but when I feel sadness rising up inside me, I put my acting training to good use and just act happy long enough to be pulled up from the depth and refocus on the positives in my life, which are still many.