I suspected my son Kevin was disabled shortly after bringing him home from the hospital, but the doctors said I was overreacting. My husband didn’t agree or disagree, he just wasn’t worried. He’d say, “Whatever it is Rae we’ll handle it.” I sunk into a deep depression that first year and fell apart while Chris held it together with endless optimism that things would get better. And they did.
Two years later though, Kevin was oppositional, defiant, aggressive, non-verbal, and I had fallen in love. This boy, who I thought I could never love, needed me and loved me with a force that was overwhelming, and I was determined to make his life all it can be. I had purpose, direction, and despite the difficulties I’d never felt so confident. Chris was different though, he was angry. Angry that his son could barely walk or communicate, and frustrated by his inability to control Kevin’s behavior.
One day, as we sat hand-in-hand watching our children at the playground, Chris whispered, “I hate him.” I opened my mouth thinking, “Don’t say that,” but what came out was, “I understand. I felt that way too, when he was born. It will pass I promise, you just have to have faith.” He didn’t believe me at the time. After all, what kind of father says such a horrible thing about his child? But I had so much faith in the future I managed to carry us through that year utterly optimistic my boys would find each other again in love. And they did.
But it still seems as if I’m better at holding it together when Kevin lashes out in public. A month ago he trashed a makeup display at the MAC counter because I refused to buy him lipstick. As Kevin thrashed on the floor, I helped the staff put everything back together amidst a sea of judgmental faces, and it honestly didn’t bother me. Chris? I found him in the car nearly hyperventilating from embarrassment.
Yet unlike my husband I still mourn the dreams I once had for my boy that will never come true. This past Monday there was a soccer tournament on the field I have to pass to get home, and watching all those boys laughing, running and giving high fives: I felt the familiar sting of loss. And I heard a familiar voice in my head ask, “Do you see all that joy you will never have? That beautiful scene your Kevin will never be a part of?” When I got home I called Chris from the driveway:
“Can you come out here?”
“Are you crying?”
“OK I’ll be right out! Here I am! Oh honey why don’t you come in?”
“I don’t want Kevin to see me crying.”
“Ha! Tell me again you’re not sad.”
“I’m not sad Rae.”
“And you’re not angry?”
“Nope. I love him. He loves me. My nine year old son hugs me, and kisses me, and tells me he “Lubs me wots!” Plus he loves professional wrestling what else in there?”
And boom, the tears are dry and I am reminded of how truly fortunate I am.
There have been several stops on the road to Acceptance and most of them suck: Anger, Resentment, Sorrow and Fear are probably the worst. And it seems looking back that though we made our way out of Denial together, at no point in this journey were Chris and I in the same place at the same time. One of us was always one exit behind, preparing to tow the other’s car through the next leg of the journey. For example, if I broke down in Resentment, just before it got too dark out Chris would pull up alongside side me and said “No worries hon I filled up back there in Humiliation. I’ll give you a tow to whatever’s ahead.”
Recently I’ve spent most of my time in Fear. Boys with Kevin’s condition tend to hit puberty early and he’s showing all the signs: pimples, body odor, and mood swings. Only in our house mood swings come with physical aggression. This is behavior I haven’t seen from my son in years. When he weighed 35 pounds the kicks, bites, and punches were an annoyance but 65 pounds later it has become quite painful, and I’m scared.
But I’m not terrified, because at this moment, Chris is at the wheel and he’s talking me down off the ledge.
“We will get through this like we always do Rae. We’ll find a new behaviorist, take a new class, talk to parents who have lived through it, whatever it takes. Point is, we got this. I know you’re worried but if you have faith in yourself, in me, and Kevin these thoughts of yours will go away.” And they will.