untitled 1

Juniper may learn to speak our language, or we may have to learn to speak hers. Time will tell us that, in its own language.

Most people with STXBP1 deletions are what doctors call "non-verbal." I hate that damn term. Juniper is already verbal. You'll never convince the version of me that lies awake in bed at 4AM, red-eyed and disheveled listening to her babble, that Juniper is "non-verbal."

Most people who are called "non-verbal" do make sounds and they do communicate. They don't speak our language, but that doesn't give us the right to completely dismiss their verbal abilities. If you think these kids are non-verbal, you need to listen more carefully.

As humans, we have a tendency to impose ourselves on our environment and try to control it, rather than to open ourselves to it and let it in. What is the point of language? Isn't it just here for us to connect and communicate? There are so many other ways to do these things.

Recently, Coley and I got a sitter for the girls and went to a show at the Fox Theater. We sat down in the old, suede seats just beneath the balcony and the band started to play to a sold out crowd. About three songs into the set, the sounds organized into an melodic arch, as a tear escaped my eye. I looked over at Coley, tears streaming down her face.

The song was called "untitled 1" by Sigur Ros, from the album ( ). I have listened to this album for many years. It is very special to me now, because it contains many vocals, but no words. The singer, Jonsi, sings in his own language, focusing on the beauty of sound itself. He uses his voice as an instrument. And in doing so, he proves that we have the capacity to transcend language.

As I listened to the band play that night, I realized that language would lessen the impact of the songs on that album. I would be distracted by words, from what the band was really trying to communicate. I sat and listened and cried in public for one of the few times in my life. I sat and listened and I understood.

We are so used to imposing ourselves on the world. Speaking with our own language. A child who cannot speak language can teach you to listen and learn from everything around you. To try to understand how everything else is communicating. To open your mind to all of the sights and sounds that are trying to connect with you every day. All too often we don't let them in. A child with differences can help you listen and learn better than you ever had before.

There are dark thoughts that do creep into my mind from time to time. Like whether Juniper will ever be able to tell me about her day at school, tell a lover she loves him/her, chant at a protest. Sometimes I worry that Juniper will never be able to read this blog. But then I remind myself that she is the one writing it, in a sense. The girls have already changed me, made me better than any words ever could.

Maybe Juniper will learn our language. Maybe we will have to learn hers. Maybe she will learn to walk or maybe we will have to learn to carry her.

Either way, we will get where we need to go.