Run Toward the Hope

I was cool once.  At least I thought I was.  I had cute clothes and a hunky boyfriend (now husband) and together we dreamed of our future.  A future that did not include autism.

The last four years are a blur.  Sometime in 2008 I think my autopilot switched on and has been at the wheel most of the time.  We are so far away from where we thought we'd be.  So far away from family and friends.  So far away from the only home we've ever known.

All of this could be a sad story if we let it.  If we accepted the notion that we are defined by our heaviest challenges.  But there is a fire inside me that refuses to let that be the case. It is not the case because I will it to be so. I believe it and I will never stop believing it.

My son WILL NOT be lost to autism. Doctors, teachers, therapists and family say he is. They say it not with words, but with half-baked efforts and lack of enthusiasm. They say it by changing the subject or by unanswered phone calls. And with my limited experience I have no reason to question them.

Except that he is my son and I am his mother.

I have heard and read and watched other kids recover. And if a tiny flicker of hope exists for him, then I, his mother must run toward it with all my might. And some days when my run turns into a crawl, then I crawl forward.  Always toward the light.  Always toward the hope.  Never taking my eyes off it. Not when he's five. Not when he's ten. Not when he's forty.  Not because I am so wonderful, but because he is.  Because he is worth it no matter what they say.

My mother-in-law says our efforts are shameful. That we should've known earlier - should've started earlier. And all that he will ever become will never be what he could've become if we were smarter better people.  More like her, I suppose.

I could do it better is the message.

My mother says he should be institutionalized. That anything hard should be walked away from. That I am sacrificing my other four children and their quality of life by pouring all that we have into this one child.

Don't do it at all is the message.

Strangers say I should keep him at home. Not always with words, but with dirty looks when he has a meltdown in the grocery store. They think their momentary discomfort should be avoided at all costs and if  I was a suitable mother, he would not be acting like this in the first place.

Hide him away is the message.

Friends, family and visitors avoid eye contact when we talk of him. They become visibly uncomfortable when he enters the room. Not because he's acting out, but because he's there and they don't understand him.

He's not important is the message.

I take it all in and roll it around in my mind. And I realize. It isn't Dylan whose broken. It's the world.

A world where people believe it is their right to be comfortable. Where the suffering and challenges of other people are avoided and ignored so they don't have to be late for dinner.  So there isn't any unpleasantness.  Where they turn the channel when images of hunger or suffering appear. Where divorce is rampant and anti-depressants are handed out like candy for adults. Where the elderly are warehoused in nursing homes when they become a burden. Where children (and parents) are instantly weighed, measured, categorized and valued based on their pleasant-ness.

So what can I do?  When faced with a world - an entire world - full of people who have it wrong?

I can run toward the hope.

I can take a cue from Dylan and when the world becomes too overwhelming, I can narrow my focus to one thing - the hope.

I don't know what the future holds for Dylan.  But I do know what it holds if we do nothing.  And when you're the one who is accountable - you're the one who has to bear the burden of guilt for making wrong choices for your children.  When it stops being theoretical and starts being real, the only thing you have is your gut. Not my mother in laws gut or my mother's gut or my neighbor's gut.  They do not have the insight I have because they do not have the responsibility I have.  I have a compass that they will never have because they will never be Dylan's mom.  And my compass points me toward the hope.

Advice from others must be taken for what it is: people who are not in your shoes passing judgment on things they do not fully understand.

I wish I could give Dylan all he needs and still provide all the extras for my other four.  But I tell them it is a decision to fight for their brother.  To fight for him as I would fight for them if they were in his shoes.  I tell them we fight because it is the right thing to do.  We run toward the hope because he cannot do it for himself.  We run because we all have a time in our lives when we are helpless.  And that which we hope would be done for us, we do now for him.

Someday they will be adults in a world full of apathy.  They will swim amidst the judgment and listen to the criticism.  And they will know something most people never learn in an entire lifetime.  They will know that we are here on this earth for each other - not for ourselves.  They will listen to the condemnation at various times in their lives and they will keep their compass pointed squarely toward hope.  They will know that those who snub and criticize and reject are the ones most in need because they are the ones who are missing it. They will know because having an autistic brother taught them this.  That true joy and fulfillment comes only in letting go of me-ness and running hand in hand, family with family, friends with friends, community with community towards the hope.

Idealistic?  Yes.  But having Dylan for a son has taught me how important it is to believe in the ideal.  It does not exist because we do not strive for it.  And who will ever strive if they aren't first inspired to?  The lesson Dylan teaches me today is to stop looking expectantly to others to accept, love and encourage and instead give it away to them.  To be for them what they are not for him in hopes that they will finally see it.  To demonstrate the impact one person who believes in you can have.  Even when it seems you don't deserve it.  Especially when it seems you don't deserve it.

To find the hope in them when they don't find it in him. And to run toward it. This is my goal. This is the lesson my son teaches me. This is his legacy. We live in this world that judges him and we cannot stop it. But we can refuse to participate in it.