“This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.”
-Jim Sinclair “Don’t Mourn for Us”
I found this quote recently. And it has haunted me for weeks. Every time I look at you and think of the future, it echoes. I don’t know what to think, and I don’t know how to feel.
Because in this man’s voice, I see you in twenty years. And I would never want you to think this true of me.
When I found out that you were going to be a boy, I was afraid. Not because I don’t love little boys. I was afraid for what was an irrational reason. I feared autism and, though it certainly happens to little girls as well, your chances of being affected by it are much higher if you are a boy. I remember telling a friend that I could handle just about anything, but I didn’t think I could handle autism. How ironic is that?
No, I don’t think God gave you autism to teach me any lessons. My God doesn’t play games like that. But I do think I knew something. I must have somehow sensed you were coming and feared not being the right mother for you. I now know that is ridiculous. There is only one person in the whole world who could love you as much as I do. Me. You’re mine, and I couldn’t be any more proud of you. Really.
So what exactly, you may ask, was I afraid of?
Well it certainly wasn’t not loving you. Oh, how I love you. And not in that “because of the challenge of raising a child like you I have grown so much as a person” kind of way. (I don’t know why someone would feel that way. Maybe their kids aren’t as cool as you.) I wouldn’t trade you because you are the only you in the whole world and I could not imagine having any other boy. There is no sweeter smile on this planet. You are incomparably cute. Your giggles, hugs, and kisses have no equal. Everyone who meets you raves about what a sweet little boy you are. Your soul is just magnetic like that. Everybody who meets you loves you. It doesn’t happen every day, but there are just some souls in the world like that. You’re one of them. And it makes me so very proud.
But, oh baby, how I do fear for you. And it’s because I want so many things for you. Yes, I know they may not be the things you want. I know they may not be things you are wired to do. But I want them for you all the same.
Some parents are guilty for wanting their children to fulfill their own dreams. It is the classic battle between parents and their children. The things parents want for their children vs. the things their children want for themselves. The thing is, I’m not looking for you to fulfill my dreams. I don’t believe that children are blank slates. I think you come screaming into the world exactly the people you are, and that it is our job to help you be the happiest you you can be. I just want you to have all of life’s options available to you.
I’ve traveled to foreign countries and met fascinating people. I want you to be free to do the same. I have studied and chosen a rewarding career. I want you to have that same choice. I have fallen in love. I want you to have the interpersonal skills to find someone to share your life with as well. And, if it would make you happy, I would love for you to experience the same joy having your own child that you and your sister have given me. I want you to be able to make friends. I have been blessed by wonderful friends who are even closer than some family. I want you to be able to read. Reading open doors to new worlds and connects our minds to great minds of the past. I want you to be self-sufficient. I don’t want you to be dependent on anyone else’s possibly bad decisions on your behalf. I don’t need you to be captain of the football team. I won’t be proud of you for joining a fraternity or dating the prom queen. As long as you are happy, you are free to choose any career from fixing cars to studying bee habitats. Whatever floats your boat. All I want out of life for you is for you to be content and have the ability to direct your own life.
But then I hear the echo of this quote and I become afraid all over again. I don’t ever want you to feel that, because I want these things for you, that somehow I want a different son. I love you just the way you are. Yet, I am not going to lie and say that I won’t be sad if you can’t have these things. Autism, in its severest forms, can be a thief. And I don’t want anyone stealing from you and your potential for happiness.
You are like a traveler who inhabits worlds in two dimensions. This world and the world of autism. Some autistic people will never leave that other world. They will not be able to travel freely between both places. They don’t speak the same language we do. And all we get are occasional glimpses through windows by which to get to know one another.
I know that other world is part of you. And I accept that I will have to share you. We’ll have to learn together how to find the right balance. But know this. I intend to do battle with that world. Because though I plan to share you, I refuse to grant primary custody. And it’s not because I find you less worthy living over there. It’s simply because I want you here. Pure, selfish – yet unconditional- love. Mamas can be funny like that. I know I may not win. But the losing won’t be for lack of trying. And, should that happen, I’ll keep fighting for access to come and visit you there.
I don’t ever want you to think that I am fighting you. I will always want you to be you. Autism is a part of you. And, because I love you – all of you – I wouldn’t dream of trying to cut you in half. But it isn’t all there is to you, baby. The other part of you would have been you even without it. That’s the part of you that needs to have free access to this world – to love, to friendship, to self-esteem, confidence, and self-actualization. All I want is for you to be able to navigate both of our worlds. I will fight for that –and for you.
But I am and will be proud of you for who you are. Right now.
And on the day that you will one day read this.