Everybody's Boy

“How I forgot that today was the four year anniversary of our Autism Diagnosis”

I took Everybody’s Boy to the polls with me to vote and he was a rock star.  He told the volunteer that handed him the ballot that we were ”here to vote against the “robbers”. which made my liberal heart go all topsy turvy.

We went to baseball afterwards.  It’s a great thing, a team for children of all ages with developmental disabilities.  Yet even there sometimes I feel like a misfit.  Today another child approached me in tears because EB was screaming that everyone was a bully at baseball.  I had to explain-defend-apologize-make better the situation, leaving me feeling sick because this child was in pain because my child was in pain and the whole thing was just…sucky.

With lots of tears and laying on the ground rolling in the dirt (him, not me, but I feel it’s prudent to clarify) we made it through the tough spot and I was so proud…proud that we hung in there….even though it was really really hard.

Daddy was at school today.  His very last day of classes.  He’s now a bona-fide EMT (or ambulance medic in EB speak).   I’m really proud and really scared and really confounded.  I’m so grateful he’s found a career that he excels at and that suits him.  But I have no idea how we will do this with he and I both working full-time.  We have a wonderful support system in Gus’ parents and EB’s developmental therapist, Cassandra…but a long summer awaits light on  services and support, little money for therapy/camps/anything and what happens when we are both gone 40 hours a week?

Also, I really really just want a week…or a few days…in a hotel room with my boys.  Just us.  I don’t care where it is.  I just want to get away from here.  I want to sleep and play and not have therapy, or work, or school, or bills or anything to think about.  It’s not a possibility.  So instead, I took time to dance in the rain today…just like I would’ve at home.

Home will always be Florida.  It’s been over four years we’ve been away.   We left to come to NC and we never went back.  It’s been the best decision we could have ever made to move our lives here.  I would not change it for the world – but I never thought there wouldn’t be room for even a visit in all these years.  It’s too hard to fly with EB. it’s too expensive, we don’t have the time, there are numerous excuses…but sometimes, when it storms like it does today and I find myself running outside barefooted and fully clothed to allow the water to pour down my hair, my back, my face – washing the tears and renewing my soul…I just for a minute forget that I’m not in Florida….that I don’t know when or if I’ll ever be in Florida for one of those thunderstorms I yearn for again.

We went to free comic book day and scored some goodies before the live band spooked the boy and then came home to incessantly google Super Mario Bros characters and create a book.  While making the Mario book with EB  this afternoon I felt a wholeness that had been missing for so long that it actually stuck me with a flood of emotion.  My child and I bonded and played and I didn’t think about Autism or money or what the future has in store.  I was present.

I forgot to remember.

I forgot to remember that today is the four year anniversary of EB’s diagnosis.

I didn’t realize it until after Gus got home, as we were talking about the merits of ordering takeout Mexican food in honor? of Cinco de Mayo.   I remembered that Cinco de Mayo was our diagnosis day.  A day that I typically dread upon it’s approach – a day that I analyze the progress of the past year – a day that I allow myself to feel whatever I want to/need to feel to make it through the rest of the year.

And I forgot!

That’s pretty awesome I think.  I lost myself in my child so much so that I forgot to remember his Autism.

Have I reached some new level of existential nirvana?  Or is it possible that it really is just another day?

Shortly after I posted on the EB Facebook page how excited I was that I “forgot” and how amazing everything was…reality hit.  There was a meltdown, it involved a box of Cocoa Puffs being strewn around the kitchen, and a bite to my head resulting in a mouthful of hair, and while I regrouped and kicked myself for not “knocking wood” the popcorn ceiling in the bathroom (and everything else) being soaked with the handheld shower head.

By the time Gus got home with the Mexican food I had barely pulled myself together enough to get EB diapered and dressed and in bed.

I laughed sardonically at how I had forgotten to remember the autism.

He’s asleep now.  It was a hard day.  In fact it was probably more “hard” than “fun” but somehow the fact that there was cause to forget gives me hope that I might be able to remember to forget more often.

Happy “Cinco de Mayo”.  I think I’m going to see how that two-hour old Mexican food tastes and watch a movie with my husband.  Maybe I’ll even celebrate my amnesia just a little bit.

I cannot think of an act more innate than love.  It’s profound, yes, but it’s also simple and natural and…universal.

Love is a fundamental player in every single facet of life.

Love or – at times – the void of love is always present.

Sometimes I worry that my child won’t experience the full spectrum of love, due to his Autism or perhaps due to the choices society makes in embracing him and his Autism.

I fear others who will not love him, who may treat him as if he is less, because he is different.  I want to protect him from this but I know that it impossible that I could intercept all things hurtful on his behalf.  So I rely heavily on his community to aid me in protecting him through love.

I rely on his teachers, his peers, his neighbors, his legislators and complete strangers to do the right thing – to protect my son’s civil rights.  To facilitate inclusion for him  in his community, to offer support to him towards that end, and to protect him from “bullies” of all kinds,  so that he may live the life he chooses in the community he wishes.

Am I wrong to expect this of our community?

Would you argue that because he is different he is less?

I doubt anyone would argue that he is less.  After all, our nation is founded on the principle that “all men are create equal” and afforded the inalienable rights of “life, liberty and the pursuit of happiness.”

Even if our community did fail my son, there are lots and lots of laws that specifically protect him and others with disabilities from discrimination.  They took a long time in coming, true, and they probably do not reach as far as they could in some areas – but they exist to protect my child.

All of this happened because love won out over hate and fear.

Because of the love of those who went before us, no one has the legal right to discriminate against my child because of who he is.

No one can tell him he can’t…

Unless, he was gay.

Because somehow being gay here in North Carolina is okay, as long as you don’t want a side of “liberty” with it.

There are some people who want to take away the most basic of rights from same-sex couples.  They want to tear down families and set the civil rights movement back decades…because they believe that their god instilled in them a divine providence to enact bigotry in his name.

It’s called “Amendment One” and would actually change the NC State Constitution to state that defines marriage as only between one man and one woman.  Right now in NC?  Marriage is defined as only between “one man and one woman”.

Why the rush to pass this legislation?  I don’t know honestly. I’m not sure even the proponents are sure why.  Here’s a website with a very nice looking white family that seeks to explain it.   Honestly, I think it’s just a big cluster-eff  fueled by right-wing extremist fear mongers and allowed to grow into a movement largely in part due to complacency and indifference on our part.

Somehow god got thrown in there and urgency and fervor gave birth to this emotionally charged blurring of the line between church and state – a line created to protect the very religious freedom which seeks to oppress.

Somehow love got lost.

You see, I don’t know this god of hate and fear.  And neither do the hundreds of churches that have bravely come out “Against the Amendment” in North Carolina.

I know I’m more liberal than most of my peers but this isn’t about liberal or conservative.  It’s about protecting the rights of families, of children, of the sanctity of same-sex and straight relationships.  It’s about protecting the rights of all (married or not) who are victim to domestic violence.  It’s about allowing people who are in domestic partnerships to pay for and be part of their loved one’s health care plan .

It’s about letting love prevail.

If none of those things resonate with you, think about the business that will be lost in North Carolina should this law pass.  Now is not a time for NC to take a gamble at becoming more economically depressed.

If you disagree with gay marriage, please allow me to clarify that gay marriage is already illegal in North Carolina so this law is unnecessary at its very best.

I beg you to think about this issue in the broader sense.  Our children, our precious children with disabilities, those who went before us fought long and hard to secure their rights.  They still fight today to maintain them, to enhance them, yes – but someone paved the way to make our work easier.

Won’t you be part of that movement for our friends who are in the LGBT community?  Won’t you stand up for equality for them?  For basic human rights?  For respect?  For dignity?

For love?

Please Vote Against Amendment One on May 8th in North Carolina.

Because Love is Love.  Because we have an obligation to our neighbors, to our community and to our children to fight for what’s right, to protect their rights.  Because it is the right thing to do.  Because they did it for us.

Because we in the disability community were once, are now, and will always be one step away from being the targets of Amendment One.