When My Son With Cerebral Palsy Set Out to Climb ‘the Spider’
I came early to pick up my son today. I sat on the hard, metal picnic tables to watch Ethan climb the Spider. If you don’t know what the spider is, you most likely have never been to a playground. It is indeed as its name suggests — a climbing apparatus shaped liked a spider. It is a dome with arms like small ladders that shoot out in all directions. The child starts out on the ground and climbs on the curved arms until he reaches the domed top where he is able to just sit, stand or hang out with his friends. I am not sure of its real purpose, other than to be climbed. It is not terribly high.
Ethan had informed me this week that it was his personal challenge to climb this piece of playground equipment. I clearly can see the Spider teeming with life. It’s as if it’s a living, breathing organism because so many children have enveloped it. They race to the top. It’s as if they were born knowing how to climb it. It’s innate to them. They hang by a thread upside down with their eyes closed. Yet, there’s no fear. They trust their abilities to hang on this perilous piece of equipment because they’ve done things like this since the beginning of time. It makes me smile, and it makes me sad.
I watch Ethan circle it, like a lioness circling her prey. He’s trying to find the perfect place to attack his nemesis. He needs space, so he waits for everyone to move. Yes, he needs the perfect moment for a climb such as this. For Ethan, it’s not innate. It might as well be Mount Everest. He takes the first shaky step… up. He places his hands on the bars and ever so carefully, he pulls his body… up.
If you look closely, you can see his feet turn inward as he climbs. The reality is most people never look that closely. They don’t look at him with the scrutiny and intensity that I am at this moment, studying his every move. I study it because I am his mom. I watch from afar.
I hold my breath as he climbs. Will he make it? You know, to the top. I don’t know. So far, he has only made it a few rungs. Will he fall? I know he could be seriously hurt if he falls. His reaction time is poor. Plus, he falls often because he has cerebral palsy. Therefore, it’s always a possibility. I hold my breath. I want to tell him to not do it. I don’t want him to climb. He’s safer on the ground with me. His balance isn’t very good. His hands are not always sure.
I want to rush out there onto the playground and push all the other children out of the way and just place him on the top of the spider. I know his teachers wouldn’t mind. They’re great with him. They would understand. After all, he has a disability and it’s not too much to ask to provide a push for someone such as Ethan.
I want to explain to Ethan in the nicest way possible that he’s different from all the others. Thus, there are just some things in life he may not be able to do. I question: why does this harsh reality have to happen so young? In my heart I imagine me telling him that his spider may be one of those things.
I just can’t do it. I’m a good mom. So, I sit back and watch him climb. He climbs slowly, carefully, almost methodically. Will he reach the top? I don’t know. He’s never even tried a climb such as this before, and he’s never gone this far up. Will he fall? I don’t know.
Then, I’m struck with the notion that much of being a mother consists of the following skills: Love, Fear and Letting Go. With a child who has special needs, these fears are amplified. It’s as if you turned the volume up on your feelings.
I can remember when he was less than 3 pounds in an isolette. I would place my hand on his tiny body. He was so fragile that the nurses would not even seal his diaper for fear that the tape could damage his paper-thin skin. Ethan was wearing the tiniest diaper that I’d ever seen, and his eyes were covered to simulate being in the womb. However, at this moment, I had the pressing urge to feel him — his skin — to know he was indeed breathing. While watching him, I saw that his tiny being possessed so much determination and tenacity. I’d almost lost him at birth. Yet, there he was. I couldn’t help at that moment feeling he was destined for greatness.
I knew his respiratory stats on his monitors showed he was indeed breathing. However, I had to prove this obvious fact to myself. So I would place my weathered hand on his little chest and feel his body rise and fall. I would feel him breathe. It would make me feel as if everything was right with the world. I could just live in that moment forever, touching Ethan’s skin.
However, while placing my hand on his tiny chest, I knew at one point I would have to remove it. Yes, let go of my baby. If he lived or died, it was not up to me. I was just a spectator in his world. He was my champion. All I could do was love him from afar and have faith that he would indeed be OK. In turn, I would be OK. I would get through this.
I’ve done this throughout his tiny life. This feeling is an old friend to me. I recognize it and acknowledge it. It’s always there. t was there the day I dropped Ethan off at school for his first day of Kindergarten. I can visualize that day — Ethan wearing his new shoes that glow and carrying his brand new book bag. He was smiling. Would he be OK in this new environment? Would these individuals recognize his strengths and work through his limitations? Would he survive here in the perilous world of school?
I know I will do this again in the future. I will have this feeling again and again. If I’m lucky, I know one day he will drive out of my driveway alone with some used car that only a teenager would possess. I will stand in the driveway and wave as he leaves. I might take a few photos just to remember this moment of letting go. Then, I will return to my home and wait to see what will happen in my son’s life. Just like I’ve done since the moment he was born.
I know in my heart it will be ever so difficult waiting, watching as Ethan navigates the harsh roadways of life. However, a child will never have the opportunity to reach his full potential — his destination in life –unless I, as his parent, am willing to take the risk of letting go. Can he handle this responsibility? Will he get hurt? Will he go far? I don’t know. But I’m excited to be a part of his journey, and in turn, his journey becomes a part of my journey.
Today, that image is far, far away, because today, I just watch him… climb.
Want to end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.