Happy birthday little boy. I can’t believe you were born two years ago today. It was so very bitter-sweet. I was happy to finally meet you. It wasn’t long however, when our introductions were interrupted when you stopped breathing. You were taken away by the specialists who wanted to run lots and lots of tests. Tests which they felt would tell us who you are. Two weeks later a geneticist gave you a diagnosis that I thought would completely define you. I’m slowly learning it does not. And even with all of the common symptoms you share with your Cri du chat brothers and sisters, God made you incredibly unique. I love spending time with you.
While the geneticist’s delivery of information was not what I hoped. She did give me a gift. It was the gift of low expectations. Expectations that you are exceeding. And I don’t just mean in the physical things you are doing, but in who you are. You are a very special boy entangled in a disability. A boy who is so sweet when you stare deeply into my eyes or when you want to cuddle up in a ball in my lap and listen to me talk. A boy who will click your tongue at me or grunt like a bear to get my attention. A boy who gets feisty when you want to do something on your own but aren’t completely able to explore this world the same as most toddlers.
Your disability is giving me a new perspective on this world. The way I live in it, is driven by my schedule, by anticipating the next need, and thinking of my next idea to implement. Your way of living in this world is to be so fully in a moment. You have the ability to slow me down to real-time like no one else. To be fully present with you. To interact with you regardless of whether I get something in return. To pay attention. To know what is happening now, rather than strategizing and preparing for what is to come.
You, my little boy are teaching me great, big lessons. I am learning this is not a bad way of living – to be fully where I am and to love fully in the moment. To trust completely in the provision of God for the future – both yours and the rest of our family. You’re not worried. You trust. You persist. You move forward in your way, in your time, no matter what others are doing.
Although it was crushing at the time, I’m thankful now that the doctor set the bar so low. Her low expectations gave me the sheer surprise and complete joy of your accomplishments. Because of what she said, every little thing you do is significant to me.
Every time you meet a milestone, initiate an activity or a sound, every time you decide to try to play with your brother, I’m witnessing a little miracle. Those little miracles are building my hope, increasing my expectations, fortifying my resolve and allowing me to bear witness to the work of God right here on earth.
There’s no doubt in my mind this next year is going to be busy. It’s going to be full of even more therapy–hopefully fewer doctor appointments–and more socializing you and integrating you into our world. The word intense comes to mind. I want to immediately start planning and scheming for how we’ll make our way through it, but I know the answer is in your response, your very nature. To take it as it comes, observe every little detail, and learn how to make our next move from there. It sounds reactionary, but really I think it’s revolutionary. Yours is a nature of dependence.
Last year your birthday felt like an accomplishment – you made it a year. This birthday feels like a true celebration of your life. No, there won’t be a big feast with yummy food and a themed cake, but this celebration is a true celebration. A true celebration that says, “We’re glad God made you. We’re glad you’re here. We love having you in our family.”
We celebrated Nathan’s birthday with friends at the sMiles4Sammy Family Fun Run just like last year. sMiles4Sammy provides support to medically fragile children. And don’t let these pictures fool you, we didn’t run the whole race. Mac did run the entire 1K Kids Run. Nathan ate just a little bit of pudding to celebrate his big day. We are full of gratitude for your love and support. What a good day.
Also be sure to check out my list of Favorite Books on Disability!