Sometimes I remember how I viewed the parents of children with special needs before I had one of my own. I remember that I looked at them with a mix of awe and pity. Awe because they seemed to have it all figured out. I mean, they had to, right? They had to have it all figured out, the true meaning of life and unconditional love and the importance of family and all that, because there they were everyday wheeling around their broken dreams and unfulfilled hopes in wheelchairs and strollers, all the while keeping what seemed like very genuine smiles on their faces. They were the picture, to me back then, of selflessness and sacrifice, people who could find joy in the face of a difficult life sentence, so to speak.
And pity, of course, because I believed that the children they were wheeling around (or carrying or leading by the hand) represented broken dreams and unfulfilled hopes. I felt sorry for them because I believed no one would ever willingly sign up for that. I saw it as a burden foisted on them by cruel fate, an unfair shackling they had just inherited at random.
Admittedly, these were childish beliefs, the most simplistic way to view an enormous range of personal experiences that were no doubt all incredibly complex. And I understand that there are people in the world who have an even more lateral view of the subject because when I was pregnant with Lincoln, I got into a debate with a friend who was in Med school when I told him that I had opted out of all but the most basic prenatal testing. He argued that I should accept the testing because it could catch the “debilitating genetic disorders.” My response was twofold: first, that there was no treatment for any genetic disorder found using these tests, just the option to terminate; and second, that I had no intention of terminating a pregnancy because the baby was not what I expected.
He pushed me, saying that he had seen “these families” in his clinical training, and they were miserable people saddled with “these children,” who were a drain on their time, money, and emotions. My answer at the time, having no clue I was carrying one of “these children” in my belly at the time, was that I had met some of “these families” myself, and they had never seemed resentful or drained. In fact, they seemed almost saint-like in their inexplicable joy and in their undaunted love for their children.
I guess what I’m saying is that on one hand, I am embarrassed of the way I viewed families of parents raising children who were not typical. I am embarrassed that I thought of their children as broken, even if I respected them enough to be willing to become one of them if by some distant chance I conceived a less than genetically perfect child.
I have addressed before the fact that we are nowhere near saint-like in our roles as Lincoln’s parents, and I find it highly uncomfortable when people imply we are. Uncomfortable because in order to assume we are saint-like you have to assume we have been saddled with a burden, a child who is a drain on us that we accept because we are exceptionally loving people. And the truth is that the complete opposite is true. Our love for Lincoln is so very selfish and egotistical. Here’s what I mean…
If you are parent, picture how much you love your child. Picture how much every little move or mannerism pleases you, how much you adore the way their legs move when they jump or that unforgettably sweet shape their lips make when they say “oooo.” Think of how your heart jumps when they walk up and grab your hand and smile up at you.
Now, imagine that each of these little milestones was ten times harder for your child to reach than for the billions of typical children in the world. Think how much more each jump, each “ooo,” each lacing of the fingers would mean to you. Your love would not be diminished because the jump came later than other children’s’ jumps; it would be magnified because you had both waited so long for that jump. Your love would swell almost unbearably in your chest, and that half inch of air between your child’s shoes and the pavement would be like the depth of the Grand Canyon in your mind. You would soar with him.
Many people have pointed out how egotistical it is that we adore our children so. They are the sum total of ourselves and our dearest love, they look like us, and their victories are facilitated by the sweat and tears we pour into them. It’s one thing to love a typical baby who grows and develops just like any other child. We celebrate their accomplishments, learn by teaching them, and absorb the wonder with which they see the world. How much more acute, then, can the love for a special needs child feel to his parents? When each celebration is that much more highly sought and honestly earned? When the lessons must be broken down and taught once and yet again? When the wonder is so effervescent and constant?
My son is not broken. I know that, but sometimes I fear other people don’t know that. I fear they look at me and see what I used to see, which makes me assume that they might be pitying me as well. Which, ironically enough, makes me want to pity them a little for not knowing the truth of love and how it can come and completely sweep you away.
In retrospect, I understand that the parents of children with special needs seemed saint-like to me back then because I believed that I could never be happy in their shoes and because I was not convinced I could love a “broken” child. I did not think I do it, and so I figured the only way they could manage to do it was by possessing some holiness, some virtue that I did not. And therein lies the problem with putting people like me up on a pedestal: it assumes that loving my son is work, that I am accomplishing this Herculean feat by sheer will and purity of spirit. When, in reality, this love came to me, not from me. It is not something I have acquired through effort. It is something that just is. The second I touched Lincoln on his first day of life, I loved him more than I could ever imagine, and the more of himself he shows me, the stronger that love grows. He jumps, I soar. It’s all very selfish and egotistical on my part. I’m just waiting to see how high we go.
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