Walking the talk- with a pragmatic speech delay

I was 16 when I had my first "OMG, the world is not the way that I thought it was" moment.

I was a junior in High School and invited to attend a Conference that the Mayor was sponsoring on 'Race Relations' in schools.

This was New York City so there were a few things to talk about. There were students from every High School in the city. Some were college bound, some got their clothes from the lost and found. We were Gentiles and Jews, Muslims and everything else New York had to offer. We were all shades of New York and I was so excited to be a part of a dialogue where unity and what the next generation had to offer was the focus.

I attended a workshop entitled "Violence in the Halls- more than just fist fights" and was surprised to find myself the only white person in the room.

Very quickly the conversation turned from introductions to deep sharing. Voices got raised, tears were flowing and hurt after hurt got named. Heads were nodding, hugs were given and there seemed to be a common understanding about how vicious fellow students, teachers, administrators, and other people's parents could be. Except by me.

I had nothing to add. So I just listened.

Apparently word  got around that this particular workshop had gotten really heated and when we were done and opened up the double doors to our smaller room, there were people gathered around to see what had gone on. This included a number of reporters that were there to cover the conference for the Mayor's office.
I was ready to step aside and let folks who had actually spoken during the session share what had gone on when something significant happened.

Every single reporter (at least 4-5) made a beeline for me.

A microphone, a camera, and several notepads, all in my face to find out my take on what had happened and was I "attacked" during the session.

Crash! That was the first time that the facade of the world that I thought we all lived in came crashing down and a whole 'nother perspective came in to view.

It was one that was painful to look at. The world was not the way that I thought. People really were treated differently.

I spent the next 20 years looking for more of those moments. It broke my heart. It broke it wide open to hold even more of the world that I actually live in. It was a spark that linked understanding to action and while sometimes it burned (like when I got a serious talking to about taking up too much space during an anthropology class in college) it also gave me direction and community. I chose to be a social worker in schools so that I could work and play with children and the adults they spend time with, helping to create a culture of overt anti-racism and unlearning oppression (and yes celebrating diversity too). I went to work with white people and knew that while diversity was essential there was/is work to be done before we share space (and power) with people of color. I represented. I said the wrong things over and over. I found other white people to work shit out with. It was my professional, my personal, my spiritual life. I wanted it to be a part of each and every day and each and every way I walked through the world.

And then....when I was 36, my professional life dropped away. My personal life became about 18 hour days in the ICU and my life in connection with the Spirit came down to a faith that the life of my son was to be celebrated in every waking moment because who knew how much longer he would be with us.
My days got filled with ejection fractions, syringes, visitor badges, and staph infections. Later moving on to developmental delays, feeding tubes, Dr's visits, OT appointments, PT appointments, Speech therapy, early intervention, special education, and a larger germ pool.

I'm a stay-at-home mom of a 4 year old with developmental delays, a heart condition, a feeding tube, who loves robots, drumming, and is no where near being ready for potty training. He's also nowhere near being able to understand that his mommy's heart is breaking for what our society is doing or not doing now that Trayvon Martin is dead, and Shaima Alawadi is dead, Wendell Allen is dead, and Oscar Grant is dead. It's not just nor has ever been just differences and inequality. It's violence and people grieving their loved ones.

So how do I walk and talk my heart when my kid's not even consistently understanding that he has poop coming out of his tush? How do I let him know that he's gonna grow up balancing his significant privilege with some significant setbacks? How do I let him know that there is room for both as he walks through the world and the challenge is to not become stagnant in either? How do I manage the tube feedings and fights with insurance and ordering meds and trying to find appropriate summer programs with what used to be my life's work of uncovering/understanding/unlearning oppression?

I don't know. I do know that parenting is hard. I know that this 'parenting plus' thing is really fucking hard.  I know that I want so much for Simon...in regards to his living with Dilated Cardiomyopathy but also just living in this beautiful and brutal world. I want Simon to grow up to be a man that works on understanding and dismantling unjust systems. I want him to do it with all the love and energy that's been been sent his way and has been essential to his thriving.

And he is. And other people are not. It's not an easy uncomplicated life. It's just not.


Some pics from the last few weeks with family celebrations and visits.

Simon and Hat

 Delight

 Checking on the Chickens with Wanda

 Gathering Eggs

 Harvesting Greens

 Smelling the Greens

 Traffic Jam in the living room with Moses

 Switching vehicles doesn't help

 ...but carpooling does!

 Snack time with MM

 Someday I'll have a goatee like yours PopPop