For awhile I wanted to push aside the sadness for all the dreams I thought were gone. Mostly because they were my own dreams for my girls, not the ones they will have, and it felt selfish to dwell on them. Maybe Gianna wouldn't have wanted to keep doing ballet anyways, vestibular impairment or not. I always thought that when my children, however many there were, got older and were in school, I'd do something else. Maybe write more serisously. Or become a lactation consultant or a doula. But now I am not sure how long my daughters are going to need me, and in what ways. I don't know what the future holds, except for this partial knowledge of what might come.
No one knows what sorts of sadnesses await them and that is probably a good thing. While I can prepare by learning about low-vision accomodations, the anxiety it brings me to think about my children needing a service dog to get around can be paralyzing. I'm being completely honest here. I am sometimes terrified of the future. I ache for the things I think my daughters will not get to do.
Meanwhile, prayers and thoughts and kind words are rolling in. Comments on this blog, emails, Facebook messages, an anonymous letter in the mail...all telling me that so many people from all over are praying for my little family. How humbling to need these prayers....to feel that they quench a thirst in me for mercy and grace. How surprising to discover how truly connected we all are, this Body of Christ. These prayers are slowly bringing me around to realizing that I can allow myself to be sad for the things I think are gone. It won't be until I can let go of those dreams that I can begin to have new ones.
Last weekend, snuggled on the couch with Gianna, we were talking about our trip to Boston. She was nervous because she is tired of getting her eyes dilated with eye drops and scared about having yet another doctor take pictures of her eyes.
"Why? Why do I have to?" Those big, brown eyes questioned me. Yes, why? Your genes. My genes, daddy's genes. I don't know. Not the right kind of protein for the cilia in your retinas. Yes. Why?
"You, and Pia. You have Usher Syndrome. It is why you are Deaf, and why you have different balance, and it's why we are going to the eye doctor a lot because maybe...your eyes will change and we need to learn about how to protect them."
I had to stop there because how do you tell a six year old she might lose her vision, especially when you don't know how quickly it will happen or if gene therapy will be ready in time to save it?
Plus, I was starting to get choked up, and I could tell she was concerned. I'm the mom here, I'm the one who sets the tone for this. It was grace, and grace only that allowed me to say,
"You can still do whatever you want to do. It might not look like the other kids, and it might take you longer, and you might have to work harder, but whatever you want to do you just tell me, or daddy, and we'll find a way. We might have to get creative, but we will figure out a way."
I was in a dark, dark place until I was asked to think about Gianna and who she is. I remember how she bravely let me put on her "ears" each morning even though she was scared. I remember letting her embrace giant speakers at a wedding so she could feel the beat of the music. I remember her little hands forming the most beautiful, imperfect signs. I remember how this past summer she cheerfully let me put her speech processors in plastic baggies, and then pin them to her hair, and then cover it all up with a swim cap so she could dive under the water at the pool but still hear her friend's voices as they played mermaids and sea turtles.
A few weeks ago, at the zoo, we ran into a lady who was using a guide dog. I could barely keep myself together, especially when Gianna wanted to know why the lady needed a dog to help her to get around. I ended up talking to the lady and she was so, so sweet. She expressed sadness that my girls had retinitis pigmentosa, which was the same cause of her vision loss, but she said, "They can still have a full life. I'm an athlete. I run marathons. If you support them, they'll be fine."
I am still sad, and I am still scared. But I am also starting to experience some hope and trust again. I have no idea what is going to happen, but I was never in control in the first place. When I found out I was going to be a mother, I didn't have any of this in mind, but isn't that motherhood, and parenhood, in general? Who of us would say, "Yep. I am exactly the kind of mom I thought I'd be, to exactly the sort of children I knew I'd have."
There's a lot in our culture that tells us we are in charge. We can lotion and potion our way to the exact moment we want to have a baby, and then we can even chorionic villae our way into believing we will have a baby that meets our criteria, whatever those are. But we're actually, really, not in charge and I'm realizing that is a good thing. Maybe if I were in total control I wouldn't have to suffer, or watch my children suffer, but then maybe I wouldn't have experienced any of the joys that have come to me completely unplanned.
Learning a new language out of love and necessity. Hearing the world for the first time through my daughter's ears. Growing in confidence that I know my children and their unique needs. Meeting people from all walks of life and being able to celebrate differing abilities. Watching my son replace the coil on my baby's head so she can hear his stories. Thinking that something is insurmountable until suddenly, it isn't.
I've got to let go of control, so I can be open to all the joy God has intended for me and for my family. Your prayers, they are getting me there.