Fairness

A short time ago, I put Zachary to bed for the night. We did our usual routine. I changed his diaper (he stubbornly still will not bm on the potty), brushed and flossed his teeth, kissed and hugged him goodnight, and then sat quietly nearby listening to his little squeals and recitation of song lyrics and movie lines. His sweet voice and innocence often makes me cry at night when I listen to him.

My neighborhood is full of children, many of which are little boys that are about Zach's age. They play football, ride their bikes, chase each other around the their yards, and playfully pick on the girls. They have friends, proudly wear sports jerseys, and try to act tough. They act like boys...typically developing boys...yet, I don't think that anyone else in the neighborhood sees them quite the way that I do.

My son's once sparkling, angelic, baby blue eyes turned vacant and gray seven and a half years ago. He spent his second year of life adhering to the demands of a multitude of therapists that filled our home five days a week. He wasn't potty trained until he was four and still, at eight years old, only urinates in the toilet. He didn't say "mama" until he was five and it wasn't until he was seven that he could say "I love you". He still enjoys Elmo, soft blankets, and leapster games. He spends his days, as he has for seven years now, being taught by therapist after therapist how to do the most basic things like saying "hello" when you greet someone and look someone in the eyes when they talk to you. He doesn't play football, ride a bike, chase the other boys, or playfully pick on the girls. He doesn't have friends, care about sports teams, or try to act tough.

When I look at Zachary's life, I am filled with pride and admiration. I am the mother of a little boy, who has had to work 110 times harder than the "average" kid to do the most basic things. Sometimes he gets frustrated or tired, but he still continues to work hard in school and at home. He willingly goes to restaurants with our family, even though he doesn't eat any of the food they make and the noise and chaos is torturous for him. He sits in waiting rooms through piano lessons, waits in school lobbies for sibling therapies, and patiently waits in the car for drama club to end. He does all of that without protest or complaint, even though none of the activities or appointments are ever for him. There is not a malicious bone in his body and his love for his family is as pure and real as it gets.

So, why do I sometimes cry when I hear him chatter at night? I cry because I will never get to know my son's thoughts and ideas beyond what his simple vocabulary can facilitate. I cry because he will never know what it's like to experience the joys of true friendship and intimacy with others. I cry because I hear the comments of other children, mocking his odd behaviors, and pray that he will never truly understand what they are saying. I cry because he will have to endure a painful surgery because of something that is beyond his control. I cry because he is as sweet and innocent as a newborn and will stay that way forever.

Fairness...what is that anyway? Do I even have the right to ask if all of this is fair, when there are parents out there whose children are terminally ill or have passed away? I suppose not. But, as I look out my window at the neighborhood boys playing a game of touch football on the next sunny afternoon...it's hard not to ask the question.