On August 25th we celebrated Cara’s birthday. We celebrated her journey, her amazing big sister Natalie and our new adventure in California. I laid in bed that morning with tears in my eyes as I reflected on the past year. I think the tears will fall every August 25th.
Every year I feel like my skin gets thicker, my heart more tender and my lens to the world clearer. I can’t articulate how having a special needs child transforms you. All I can say is that it breaks you down, builds you up and spits you out completely transformed. My heart aches for people I didn’t even notice before. I have no patience for stories that I use to relate to. I celebrate what I use to take for granted. I appreciate the kindness of people in a whole new way. I am tougher and softer. This transformation doesn’t just happen once, when you get “the news”. It happens over and over and over. Sometimes it is just a small comment, look or event that kicks you back down. You change the first time you take your child out in their chair and you need to decide on another restaurant because of confined spaces. You are not the same when you discover your life revolves around a feeding schedule and feeding equipment. You heart is stripped and vulnerable when big sister says “I can teach her to walk. I will help her.” Your skin grows new layers every time half a restaurant watches you connect your child to her feeding pump. You rewrite your definition of hope when you see your disabled child dance for the first time even if it is just a little wiggle. (Keep in mind it is the cutest wiggle. Ever.) You get a new pair of eyes with every special child you see accomplish a new skill. You trade your fragile heart in for one that pumps fire when basically told that your daughter is hopeless and therapy is a waste of resources. It is exhausting but with every change I become a new person and a better mother. Dan and I stand back up taller and stronger. A dance coach once told us that getting better will keep you stuck in the same place, at the same level. You have to change completely to progress.
My birthday letter to Cara.
My Dearest Cara,
Wow, you are two! What a beautiful big girl you have become! When I reflect back on this past year the first thought that comes to my mind is how proud we are of you. What most see as pebbles are mountains to you and you have climbed and conquered. The light in your spirit shines brighter with every day. During therapy I can see how hard you fight. Your insistence to have everything happen on your terms makes me laugh and smile. I can see how hard you try to push that button, hold your head up, reach for something, roll, stand and communicate. You don’t give up. I know your body isn’t doing what you want it to. I know your hands aren’t listening to you. I know your mouth is not making the sounds you want it to. I know you are so curious about what we put into our mouths and want to try it. You will find a way. Daddy, mommy and Natalie are here to help you with everything that you need. We love to help you! We are so very proud of your accomplishments, your effort and your spirit. You are doing it baby girl! You are doing it!
I can’t imagine my life without you just the way you are. You have given me more than I can ever return. Every day you make mommy and daddy grow in love and make our family stronger.
I love you so much!