“Llama Llama Red Pajama feels alone without his mama”. As I read his favorite page from his favorite book for the millionth time, I feel a lump in my throat and tears well up in my eyes. In less than a week, this precious boy of mine will turn 18. Oh how different I imagined 18 to be. He looks up at me with more love and innocence than I ever knew existed. I am his everything; his best friend, his voice, his legs, his protector, his mom. He is an extension of me and I of him. I want to put him back in my womb where he is safe from the world; floating around with no need to walk, loved and protected from a world full of sounds and situations that his frail body and unique brain aren’t equipped for.
“I am so sorry, my buddy”, I say to him as the tears stream down my face and his big eyes express concern. One of our many mysteries is that he never cries. He knows that Baby Llama cries in his book and he knows that means that Baby Llama is sad. He knows that when I cry it means that I am sad so he gently pats my back.
I want him to know that I’m sorry he can’t walk and run. I’m sorry he has to sit in a wheelchair and watch other kids play and jump and kick balls and ride bikes.
I’m sorry that he can’t say the things he wants to say. I long for him to be able to tell us his wants and needs and feelings and jokes. I want him to be able to tell the doctor what hurts and the waiter what he wants to eat. Imagine for a minute what that must be like.
I want him to know that I’m sorry his brain doesn’t always allow him to enjoy the things he loves. The birthday party is too crowded, the family gathering is too loud, the grocery store is too bright or he feels like he’s falling on the swing at the park. I’m sorry his brain sometimes makes him do things that hurt him like hitting his head, pulling his hair or biting his own hands.
I want him to know that I’m sorry profound autism, cerebral palsy and agitated catatonia stole much of his childhood; friends, activities, holidays and vacations. I’m sorry that, more often than not, his struggles are too much for the “special needs” activities and programs intended for people like him. I’m sorry our society doesn’t always recognize and provide for people on the severe end of the spectrum because he is not able to advocate for himself.
But most of all, I want him to know that I’m sorry I will not always be here to be his everything. As we prepare to celebrate 18 years of his infectious smile, I am gutted by the reality that he needs me now even more than he did 18 years ago. My recent 50th served as a harsh reminder that time is not slowing down. I am haunted by the thoughts of him as an older man, sitting alone without me by his side reading Llama Llama Red Pajama to him while he insist on holding my hand as his lifeline.
I am so sorry, my buddy. I know why you love and relate to your book about Baby Llama and his mama. It warms and breaks my heart at the same time. I promise you that it is my life's mission to do everything I can to make sure that you are loved, cared for, fed, read to and hugged when I am no longer next to you because as your favorite book tells you, “Mama Llama’s always near, even if she’s not right here”.
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