If I was asked to describe Champion in one word it would be determined.
I googled determination and this is the definition: Having made a firm decision and being resolved not to change it.
This defines Champion.
During a routine ultrasound while pregnant with him I remember a voice whispering to my heart that the essence of who your son is, the spirit of him, the soul of who he is, is exactly who he was created to be. We did not know of Champion’s diagnosis till after he was born. I did not know at the time the weight of those whispered words or what they would come to mean to me.
Champion’s determination is part of who he is. It is an innate trait of his that exemplifies itself in every area of his life. It works two ways. When he has made a firm decision and is resolved not to change it, he does not change his decision. Whether that applies to something he wants to do…or something that he does not want to do.
One area in particular that Champion has shown this fierce determination is walking. He has made it up in his mind that he wants to walk and that is what he is going to do, no matter how challenging it is for him, or how much work it takes him.
Champion has what is called increased muscle tone, or “tone”. This means his muscles become very stiff and hard to bend. It appears as though his muscles are very strong, however when they are not in that stiffened state they can be very weak. Due to this “tone”, which originates in the brain, not the muscle, taking steps is difficult because that requires overriding the stiffness stemming from his brain, bending the leg, taking steps, and his leg being strong enough when the “tone” is not kicking in to keep his knees from buckling.
Yet despite that, this determination that makes him who he is has overridden what his body is not supposed to be able to do and has instead made it do exactly what he has firmly decided and resolved that it should do.
And he has decided that he should walk. And so walking is what he does.
His walking may not look the same as how we typically think of walking. He currently walks in a walker. Sometimes he walks on his tippy toes and sometimes his legs cross or “scissor.” Sometimes his legs get tangled up and he needs help straightening his legs out. As of right now walking as a means of getting around in a community environment would take him quite awhile. But he is determined.
So everyday at home he asks (by saying “Ah wa wak” and staring at his walker) so we put him in his walker, and he walks up and down the hallway, taking one difficult step after another. When he first got his walker back in February of this year (2012), I wrote this to him in the journal I keep for him:
Today you worked so hard and walked in your walker across the whole hallway. It took you awhile and you were crying and grunting and concentrating so hard, but you made it. One thing I have noticed is you don’t give up when you get close to the end, instead you work harder, take better steps, and finish strong! Keep that quality of finishing strong, it will take you a long way.
His determination inspires me.