Tomorrow we celebrate Thanksgiving, and I’m thinking about all for which I am thankful. On the surface, there is so much – I have a good job that allows me to work from home while I take care of our daughter, Lucy. We have enough to eat, clothes on our backs, and a roof over our heads. We have a supportive family and a wonderful network of friends. Although we are not without our problems, I know that we have more than many others. But, deep within my broken heart, I still struggle to give thanks for a life forever changed by spinal muscular atrophy.
Last year I couldn’t face this – or any – holiday. Our son, Andy, passed away as a result of SMA in June 2009, just four days before his five-month birthday. By November, he should have been eating turkey with us as a ten-month old on his first Thanksgiving. Instead, we visited his grave that Thursday morning, hoping that he was celebrating for us in heaven, because we couldn’t find it in ourselves to celebrate here without him.
We left town in a vain attempt to escape the holiday, but it found us anyway. As we ate our dinner of turkey and ham in a little dive of a diner near the beach in Sarasota, we discovered that all we wanted to talk about was Andy. We remembered his sweet smile, his quiet laugh, and how his eyes would light up when he saw us. How he loved to be tickled. How happy he was when he played with his toys and watched his Baby Einstein videos. How incredibly smart and perceptive he was for one so very young. How, even in the face of adversity and loss, we were so lucky to have had him, if only for 20 weeks. How he would have wanted us to be strong like him and to embrace the holidays. And, so we found ourselves giving thanks.
But I couldn’t be thankful for anything else. As much as I knew Andy would want me to be, I wasn’t as strong as he was. The pain of losing him was too overwhelming and raw. I felt robbed of the life that I dreamed of for our son and for our family. I couldn’t bear to think of all of the holidays that he would never know – the life experiences that were stolen from him by SMA. I wasn’t sure how I would ever be able to face another holiday season without him. Yet, our lives were already moving forward, whether I was ready or not.
By that time, I knew that I was pregnant again, and I was terrified that SMA would take this child from us too. I was furious that this disease had so much power over us and that I was helpless to stop it. After the holidays were over, we received the long-awaited news that Andy’s little sister would be born disease-free. And, I finally let go of my selfish fears and rediscovered what it meant to be truly thankful.
I thank God every day for blessing us with two amazing children – one who watches over us from heaven, and one who is here, right now, in my arms. And, I give thanks for the little things – that our daughter, Lucy, can kick off her socks, sit in her chair, and reach out for me. That she gets a fair shot at life.
While I still have dark days when it’s hard to face the world, I will never forget the lessons that Andy taught me. His little fingerprints are all over our lives. So, I strive each day to live as he did – with courage, laughter and love. In that spirit, I will wipe away the tears and begin the Thanksgiving preparations, knowing that’s what Andy would want. This year, I will celebrate the holidays, however bittersweet they may be. I will make the best memories I can for Lucy. And, I hope to make Andy proud.