And then there are the questions we must answer.
How do I answer the question, “Do you have kids?” Actually, I know exactly how to answer that question. The problem is what that answer does to the asker. What it makes them feel, how it makes an open face turn into a clenched fist. Never in my life have I seen this incredible transformation occur in people. And of course, I completely understand. I understand so much I don’t want to answer. I don’t want to see the terrible effect of saying, “I had a beautiful daughter named Willa, but she died in July.”
When you are pregnant a ripple gets sent out in your local air. It enters the consciousness of everyone around you. How can it not? You are a walking beacon of impending arrival. Days are counted down. Excitement builds. So when the baby is born everyone asks about it. It’s wonderful news.
When Willa was born she very unexpectedly had Costello Syndrome. And when the questions came one after the other, “how’s the baby?” we had to learn the answer. We had to figure out ourselves what it all meant. The answer was not so simple. The question brought up things people did not necessarily want to hear. “She’s wonderful, she has Costello Syndrome, but she’s a joy.” It seemed there were endless caveats. Nothing could be clean. You couldn’t just say, “She’s great!” That would have been a lie. Willa had major medical issues and would have for her entire life. Willa would have never lived independently. There were many things that Willa would never do, have, say. Of course none of this means anything now.
So you learn as the parent of a child with special needs to make it ok for the askers. You employ every trick, you sell it. You use humor. You master the blithe toss of heavy words. You work to assuage the fear, the embarrassment and the discomfort of others because you want them to accept your child. You only speak about the hard truths with those who can truly understand: the other parents, the other families. You do everything you can to protect your child from judgment, starting at an impossibly early age. You start immediately. You start with how you answer the question, “Oh! You had the baby! How is she?”
And it makes you stronger. You start to embrace the fact that it really is ok. You learn yourself to laugh, to be blithe, to remember that she is, in fact, a joy. And then life takes over and you are a family, like any other, just with extras.
We learned so much about how to answer questions. We learned so many answers. We built an arsenal of them. I could summon and toss off the right thing to say to the friends, the casual askers, the close acquaintance, the family member. We learned to make the clothes that fit. And we ourselves were comfortable in them.
Now Willa is gone. She died. She died on July 9th. And there are people in this world who do not know this. So it happens, often, in small talk, in chat with strangers when they ask me, “Do you have kids?” This is an answer that I cannot make fit. This is an answer that I can find no humor for. I cannot sell this. I cannot make the asker comfortable with the answer. I cannot create a world wherein the words, “We had a beautiful daughter named Willa, but she recently died” okay. It’s not okay. It opens a chasm between me and the asker. I have literally had people turn around and walk away from me without another word. I have seen the most paralyzing fear shoot into the eyes looking at me. I have seen pure panic and the desperate wish that they had never asked cloud the faces of too many people now.
I find myself talking to fewer and fewer people I don’t know. I am just trying to avoid the whole exchange. Because, helplessly, I cannot say anything but the truth. There are no options. To deny Willa’s existence feels like a total betrayal of my daughter’s life, her spirit, the fact that she fought so hard to live. Anyone with that much will to survive cannot be ignored. I will not let her be, not even if it means I have to suffer these exchanges over and over.
I wish we still observed a period of official mourning. Not in any gothic, hair pulling, chest beating way. But in the quiet but completely disclosed and obvious methods of wearing black, of not observing holidays, of muting happy occasions out of respect for the incredible loss in our lives. I want to sit out happy times for a while. I take no joy in life now. There is no joy in a world without her. I know I will find it again. Life is stubborn in its pleasures. But for now, I want to sit quietly. I want to wear black. I want everyone to know so they aren’t surprised by my loss. I want people to understand why I am the way I am.
When you have a child with special needs you fight so much for understanding. You want people to know what it’s like to live the life with extras. You want people to know what is the same, how very much is the same. And you want them to know how big the differences are so that maybe people get why you act the way you act. Why you may be tired, why you may be more appreciative of something infinitesimally small. You want people to look at you, to see you, to have a postcard from your invisible cities. Maybe they can never live there themselves but they know someone who has traveled within them. And they have had a glimpse of their workings.
When you have a child who has died you ache for understanding. You ache for arms. You ache to feel like a person again. You ache for the times when you felt like you lived in the world. When your child dies you no longer live anywhere. You are lost.
But Willa taught me everything about learning new ways of living, of recognizing new things in people, and most importantly myself. Above all else she gave me a world in which I had to learn new roads to happiness, understanding and connection. I will use everything I have to get there again. And I hope that one day I will be able to navigate these questions and answers of my life with a peace that is a testament to my beloved girl.