My daughter, Nina, has cerebral palsy. Sometimes I wonder what life would be like walking in her shoes…
My husband and I have been watching Parenthood, the NBC hit show. The show revolves around the three generations of the Braverman family. One of the grandkids, Max, has Aspergers. In one of the scenes we recently watched, Max is having a meltdown, and his dad is visibly upset. At some point, Max stops and asks the question, “Are you angry wit me because I have Aspergers?” The question is enough to make his dad stop in his tracks, take a deep breathe and reassure his son, “No, I am not angry with you because you have Aspergers.”
We paused the show.
“Do you think sometimes we are angry with Nina because she has cerebral palsy?” Andy asked.
It was one of those sobering moments, when I had to think about my recent interactions with my daughter and the times I got frustrated with her, and yes, even angry.
“I think sometimes I act that way.” I had to admit.
“You know, it’s so easy for us to move, to do things, to just get up and go. I know she is incredibly distracted and that slows her down even more…but she lives with it. Every moment, of every day, she has a body that does not respond to what her brain wants to do. We are not helping the situation when we act like we are angry with her because she has cerebral palsy. Because we are proud of her, she has come so far despite of her disability.”
“I don’t think that I am angry because she has cerebral palsy, but I do think I am angry with cerebral palsy sometimes, and what it takes away from Nina.”
And my husband’s words stay with me…
She has to live with it every day.
And the truth is, I just don’t think I get it. I am not sure that I will ever understand what it is like to be a prisoner of my own body. To get up every day with tight muscles, fighting every move just to get dressed. Strapping on my braces so that I can walk better, but knowing that every step takes an incredible amount of thought.
And she does it, with a smile.
This little girl embraces life to it’s fullest. I know sometimes she feels like giving up, and we don’t let her, because we know she can accomplish anything she sets her mind to. And so she tries harder, and she keeps pushing, and she exemplifies the courage of the human spirit as she faces the challenges of every day life…and her body.
If only I could really understand what it is like walking in her shoes.
Because her cerebral palsy was a death sentence not too long ago. It could have taken her life. An orphan in Ukraine with cerebral palsy does not have a hope or a future. An orphan with cerebral palsy in Ukraine has little chance to be embraced by the culture, or by her family.
Almost 4 years she spent in an orphanage. Alone. Her body so tight from a lack of movement, stimulation, and therapy. Her skin so unfamiliar to touch and a warm body to hold her when she was scared, sick, or in pain.
She has come a long way.
She is a fighter.
She is my hero.
So why do I act sometimes like I am angry with her because she has cerebral palsy? I so easily forget.
She has to live with it.
What would my day be like if I was walking in her shoes?
Every single step, every single movement, I would fight my body. Yet at the end of the day, after I walked across my classroom, walked from room to room in my home, when I can use the bathroom independently, and take 35 minutes just to get dressed or undressed, it would be an incredible accomplishment.
I would know what it is like to give my very best, to give it my all.
I would know what it feels like to do life with courage.
And I would know what it is like to face a body that wants to limit me, yet to get up, move, and say, “Not today. Today cerebral palsy won’t stop me. Today I win.”