Look outside, he says. We have to tell William about snow!
I smile as we lay beside one another and look out the window. We take turns telling our baby boy about the wintery scene outside. We tell him that snow is cold and white. We tell him why snow is fun. We talk to him for several minutes about a variety of things.
This is something we do now. We intentionally talk to our baby. Not because we think he understands what we are saying, but because we want to share ourselves with him. We want to tell him about the world. We want him to hear our voices and sense that we are together.
It's a way to spend time together as a family...and it feels good.
When we first received William's diagnosis, I hardly left the house. The level of pain and shock was high and I found it hard to cope with the outside world. One Saturday morning, my husband suggested we go for a drive. It would be good to get out of the house, but we wouldn't be required to interact with people. We just weren't ready for that yet.
We drove with no destination in mind. Neither of us could barely utter a word, so we held hands and listened to music. Sometimes there just aren't words.
Quiet tears rolled down my face as we passed parks where William would likely never play. I held my breath as we passed soccer fields full of little boys, thinking about the teams that William may never join. I ached as we drove, longing for my son to live...grieving for all he may never experience.
I want so much for you. You are so wanted.
As we drove, I allowed myself to feel the unavoidable pain and disappointment of our situation. I believe it's healthy and normal to feel these things and I don't deny myself moments of appropriate grief.
We finally found our way back home. I felt drained, but I also felt comforted.
We woke up the next day and I found myself asking if we could go on another drive. My husband eagerly agreed. We both felt a sense of healing from our previous drive and thought it was worthwhile to go again.
We headed in a new direction. I quietly listened to the music, allowing the words to encourage me. I looked out the window and occasionally pointed out beautiful houses or trees to my husband. I found myself smiling once or twice. Again, we came home feeling strangely refreshed from our drive.
When the next weekend arrived, we didn't even discuss it. We just knew we were going for another drive. With each new drive, I found my attitude shifting. Instead of focusing on what may never be, I started to notice and appreciate what is.
We started talking a little bit more to one another, and soon we found ourselves talking to William. Our aimless drives began to have specific destinations.
We drove to where my husband went to elementary school. We drove to his old church. We drove to my old schools, too. We drove to places that meant something to us.
William, this is where Daddy scored a soccer goal and everyone cheered...
This is where Mommy went to school and learned how to read...
This is where your grandparents live. They love you so much...
I began singing along with the music. I began telling William about the things I could see out the window. I found that it felt so good to teach him things, to be his eyes.
I'm grounded in reality enough to understand that he's not at the developmental point where he comprehends what I'm saying to him. Yet, I know he can hear my voice and sense my presence.
Talking to him and sharing ourselves with him gives us the opportunity to validate his place in our family. It's one way for us to show him that he is our precious son and we are proud to be his parents.
We are proud to be a family.
Our situation is unique and we've had to change our expectations and our plans. I never thought our time with William could be so limited.
So we adjust. We change how we define a lifetime. We embrace the time that we have.
As I sit on the couch, I feel him kick. I know he's awake and moving, so I rub my stomach and begin talking to him. I walk across the room and stand beneath the skylight window, peering into the sun. There are at least five ladybugs crawling around on the surface of the window.
William, there are ladybugs that live in our skylight. They crawl all around on their little tiny legs, which is kind of fun to watch. They are red with small black polka dots. I don't really like insects, but I've always loved ladybugs. They are really quite special and beautiful...
...just like you.