Thump, thump, kerthump.  Thump, thump, kerthump.

There is a strange sound emanating from the hallway.  More like a series of thuds punctuated by an odd, louder noise.  It is a narrow hallway, not a lot of room for a five-year old to create too much havoc.  I close my eyes and try to visualize the responsible sequence of events when the rhythm is interrupted by a much louder sound.  Kersplat!  I feel the house shake – a child has fallen against the wall.  I listen intently but no one is crying.  After a brief pause the sounds continue.

Thump, thump, kerthump.  Thump, thump, kerthump. Thump, thump, kersplat -- he has hit the wall again.

I want to give him space, but my curiosity is getting the better of me.  What are these noises?  His twin brother is outside with his Dad, so it can’t be some crazy new game of slam-each–other-against-the-wall.  The house shakes again.  I hear his tiny voice call out with the slightest hint of a tremor, as if to reassure both of us, “I’m OK, Mom.”

The sounds continue.

Thump, thump, kerthump.  Thump, thump, kerthump.

I tiptoe to the hallway and stealthily peer around the corner.  As soon as I see him I feel the hot sting of my tears and quickly put my hand over my mouth.  I know what he is doing.

He is hopping on his left foot, his better leg. He is very unsteady, teetering as if he is riding an invisible unicycle, with his arms spread like wings.  I see that they are serving double-duty, not only helping him balance but if he leans too much to one side or the other he can also right himself by pushing against the wall.  I marvel at his ingenuity – our hallway is the perfect place for a five-year old to practice hopscotch. 

One foot, one foot, both feet.  Thump, thump, kerthump. 

But then he falls -- his left leg and both his arms have failed him.  Kersplat.  In an instant he is up and the cycle starts again. 

He has been at it for a while and he will keep plugging away until he is satisfied.  That is his style.  Victor does not know that two words, cerebral palsy, hang around his neck like offset ballast.  His arms and legs are stiff and his balance is precarious at best.  He falls a lot, has to sit to get dressed, and is much slower than the other kids on the playground.  You can see on his face that every movement is a carefully constructed orchestration.

Born at twenty-six weeks, almost four months early, he and his twin have already endured more than a lifetime of hardship.  But it was Victor who came home from the intensive care unit with a twisted right side.  He has struggled to do everything that we take for granted.

However, what really separates him from everyone else is his sheer determination.  He doesn’t understand can’t, only try harder.  And so he will practice, and practice, and practice, long after I can feign interest in continuing.  His therapists shake their heads and smile in disbelief, but the credit lies with Victor.  In the beginning I helped out a lot more, but now I am only allowed to show him once and then he will take it from there thank-you-very-much.  If we are running late I can try and speed up the process, but it will be to no avail. 

“I want to do it,” he says with surprising force for such a small body and snatches his sneakers from my hand.  And God forbid I manage to distract him long enough to sneak on his socks or shoes – time will have to stand still while he takes them off and puts them on again – by himself.  And so we are often late.  There are some things that you just have to accept.

I wonder if Victor knows he is different, although given his absolute persistence what physically separates him from his peers is now getting harder and harder for the untrained eye to see.  Is his tenacity a reflection of his stubborn personality (no idea where that came from) or born from his own observation of his limitations?  Regardless, when Victor decides that he will do something, he simply does not give up until he has mastered the task, or at least a close semblance.  And today he wants to play hopscotch.  He saw some older girls playing at the schoolyard and he loves older girls so he will be in the hallway for as long as it takes.  Last year he spent weeks launching himself from our front steps so he could learn to land on both feet like the other kids.  He is now the undisputed frog-king.

Thump. Thump. Kerthump.  Thump, thump, kerthump.

I feel it in my chest as if it my heart beat depends on each tentative hop.      

To sit on your hands while your child falls, and then falls again, is torture, but I cannot look away.  I am his mother and it is my job to bear witness.  Simultaneously, I am transfixed, awe struck, and filled with pride by both his effort and his success.

I hear his voice again and I am whisked back from my short reverie and the hallway slides into focus.  He doesn’t stop to speak; there is no time for that.  Thump. “Mom, look.”  Thump. “I can.” Kerthump. “Hopscotch!”

I smile and fight back the tears. “Great job,” I manage to squeak before hurrying back to the kitchen where I dissolve on the spot.  His spirit and will power never cease to amaze me and I understand that I am a better person for knowing him.

The next day we are down at the school yard and for an hour that could have lasted all day he hopped up and down the playground on his left foot, both of us with smiles of sheer joy and my heart bursting at the seams.

Thump, thump, kerthump.  Thump, thump, kerthump.

A week later the noises start again.  I sneak over to the hallway.  He is now working on his right leg.

Victor may have cerebral palsy, but cerebral palsy does not have Victor.

By Jennifer Gunter

Labels: Cerebral Palsy, Independent Child, Jennifer Gunter

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# posted by Writing Mamas Salon @ 12:01 AM