Last year I seemingly skated through Nathan’s birthday, like he was any other five year old. We had a party for him, bought him all sorts of presents, and even fed him a little bit of cake. It felt fairly normal except for the part where he kept nodding his head up and down in request that we sing “Happy Birthday” well past the celebration. We must have sung “Happy Birthday” 200 times last May.
As we moved into June I began to feel panicky and unwound. I couldn’t focus or grasp how to handle little decisions. Little decisions felt mammoth. I began to lose control of my thoughts and it scared me. I was moving through the motions of being a mom when the realities of Nathan’s disabilities hit me all over again. We didn’t know if he would live past a year and now we had a kindergartner. Yet nothing felt normal about our lives. Now what?
Throughout the last year, I’ve been practicing being more gentle with myself. Allowing myself freedom to feel sad, make mistakes, or even just take a nap. There is no roadmap through this life. I’m trying settle in and enjoy the ride.
Now it’s time to celebrate the big SIX.
I don’t want to go down the same path of fear and sadness this year. This birthday will look different and I believe it’s by God’s grace. We will hug and kiss our little boy, who is not so little anymore. We will gift him with presents and spoil him with cake. Then, my husband and I will get on a plane and head to Chicago to attend the wedding of a very dear friend.
It’s not that I don’t want a big party. I want to celebrate my son. Not that day six years ago, when devastation struck my soul like a lightning bolt. I don’t want to dwell on the MRIs, the blood sticks, and spinal taps. The hours upon hours I spent pumping milk and working with therapists who attempted to get my baby to eat. I don’t want to remember the moments we almost lost him or how incredibly exhausted I was. It makes me tired now, not just physically but emotionally, thinking about it.
This year, I mark his change in age, yes. But I will not celebrate his diagnosis. Nathan’s diagnosis is not who he is. He is much more. Granted, it is hard to get to know who he is, but he is doing a great job, continuing to peer out of his syndrome and show us himself in spite of the barriers and challenges he faces.
Happy Birthday Dear Nathan, We Celebrate You
You are deeply loved. You are determined, yet patient. Your tolerance for pain and every procedure you go through amazes me daily. Every night you go to bed with your favorite stuffed animal, Puppy. You wake up each morning ready to give me a hug and a kiss. You have your favorite toys and tv shows, usually involving dogs or princesses. Nathan, you understand us–our roles in your life and are a good listener and learner. Your memory is incredible. You have an incredible sense of humor and are anything but boring. You love the simple things–the breeze on your face, an unexpected sneeze, chocolate cupcakes. Most importantly you are our teacher and you lead us to the cross over and over again.
This year we celebrate you for you.
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!