what do you see?

It's 9:30 in Tucson and I have the dog on my lap and millions of thoughts running through my head- David is cleaning the kitchen and we are bouncing back and forth various events from our days. Me- the stay at home mom that catches moments around the city, making new mom friends, watching the hilarious and sometimes trying moments of our children. Him- the doctor who sees patient after patient with the most complex, interesting, heart wrenching stories I've ever heard. Music plays. Lily continually gets out of bed trying to be with us... it's life. it's normal.

Every once in a while a moment happens- a story is shared and laughs abound, or the instantaneous tears roll down my face- or we just pause and take in all that is happening.

Tonight a moment happened. A moment I'd like to record.

Bentley was recently accepted in the Department of Developmental Disabilities (DDD) and also into the program ALTCS (Apply for Long Term Care). These programs offer additional medical services, home services, and funding for camps and various other things for those with a disability. Down syndrome is not a sufficient diagnosis for these programs. So I had to fill out a ton of paperwork, go to several interviews, and allow people to come into our home and observe Bentley to see if he qualifies for these services. As it turns out: he does qualify.

David's father is a family doctor and familiar with the medical aspects of those with a disability. He was here tonight when I told him Bentley was accepted. I said to David, "Your dad seemed surprised that Bentley was eligible for ALTCS."

David said, "That's because those who know and love Bentley don't see his disability. They don't see his struggles as a disability."

"Right," I said, "They just see Bentley. That's because when you know and love someone with a disability you don't see the disability as clearly."

His response, " That's the prejudice we all have in the word disability. We think of disabled as a negatively inherent thing. So when we are confronted with a person we know and love with a 'disability'- except we perceive it as a strength we have a hard time labeling them as disabled. We immediately think: disabled is = less than. so when we see something positive- or see something as 'more than' we have a hard time using the word disabled."

This conversation is so important. It's so important for me to process as a mother and so important for me to articulate to those I love.

I often say, "You know- I didn't ask  for Bentley- I didn't choose him. But he's my son now- and so out of that I find it my calling- my opportunity- to be part of something huge- something I would have NEVER chosen on my own terms." But there he sits. And I'm in love.

This moment David and I shared is so huge- because there's this awkward balance of wanting people to love and adore Bentley because he is Bentley- and wanting them to fully appreciate what it must mean for us to be his parents. There are public moments when being his mom is very vulnerable- when he's crying on a public floor- or throwing things- or not able to communicate what he wants- or getting his dirty face print on your expensive clothes- or any number of things when I think to myself- please don't look at us right now- this is NOT who he is. He is AMAZING. Look away, please. And then there's the moments when he's everything that we adore- the gentle, giving, humble, funny, soft, sweet child that wins hearts. And I think- yes- THIS. This is a child with Down syndrome. See isn't it wonderful?

At 33 years old I feel like my life is just beginning- I'm just realizing the long term things I am passionate about. My desire to know and love others with disabilities is just beginning, but I know it won't fade- not now. Meeting the kids at Children's Clinics and connecting with the families feels so natural- feels so right.

One of the things I think about a lot is the fact that I didn't know anyone with a disability as a child. In HS kids with disabilities were separate. I didn't have any exposure to the community of special needs... but as I grow and learn this must change and here's why.... I firmly believe that Bentley has something to offer his peers and they have something to offer him- and I believe this is true for the trajectory of his life. Unfortunately our country separates people. We are separated by wealth, by race, by abilities, by all sorts of things... But inclusion as a model draws us in to celebrate our differences and unify our similarities. Inclusion is so important because it changes what you see. Living in Detroit changed us. It changed how we view opportunities, families, skin color, poverty, wealth, and the list goes on... Having Bentley has changed us... oh. it. has. changed. us.

It has been said, "Politics are what you see when you look out your window." When the view out your window is the injustices of those who have a disability- the segregation- the ostracization of the weakest- that changes how we see the world- and the things we value. When the view out your window is the injustice of race in this country- it changes your politics. But you have to see these things... and inclusion is an avenue for that view.

So as I think about Bentley- and I think about our family- I think about what we see. We see a child. A child with blue glasses and blonde hair. He's 7 years old. He loves loves loves horses. He'll give you whatever you want if you cry hard enough for it. He loves to help cook. He loves to build houses which means tearing apart mine to do it. He cares for people. He loves food. But he also has a disability- something that will effect his opportunities in education and in life. But that doesn't equal less. In fact, it might equal more. Cause he's not fighting you for the so called "American Dream." He's just trying to make a friend and eat some food. :) But he is also one of many. Many many others who get stared at and ignored and forgotten.

I don't know how to tell you to get to know someone with a disability. I think the fact that our churches and schools aren't giving others ample opportunities is a sign that there's a great challenge there... so you can start by making sure the places you are part of are welcoming others in to that space regardless of challenges... and then out of that you'll certainly get to know people.
And people change you.

So go, be changed.





Lily set up a medical clinic with a receptionist, ultra sound tech, people waiting in line, etc... so David took a pic cause it's so cute...




Bentley would have nothing of it... he need some horses in there. And all the attention. :) Not only the attention- but he took the picture just to be sure.