#ISeeYourLight

This afternoon the hubs and I went to Emma’s place at Victory Gardens Biograph in Chicago. An ABLE Ensemble production of Gems Unseen. A.B.L.E stands for Artist Breaking Limits and Expectations. The ABLE group stands alongside the students with disabilities and recites the lines to them so they can in turn recite the line. There is no pressure for the kids to remember their lines and they get to participate in a live onstage productions for their families, friends and community.

Unseen Gems is a production of 4 stories “about 4 very different people and the talents and strengths that lie beneath the surface. Over the course of 10 weeks, the cast of 21 actors with developmental differences, supported by a team of teaching artists and volunteers, devised their own tales for performance. Working in a variety of mediums including, scenes, monologues, movement and music, the group will share their true colors and diverse talents.”

Watching Emma and the actors perform was absolutely amazing. They told stories about people being beautiful on the inside and what that looks like, the outside doesn’t mean anything if the inside is ugly.

For the event I had our babysitter from 11am till 6pm. We all went out to dinner afterwards and talked about the show. I can’t explain how proud I was of Emma, Johnny’s BFF. I was honored to be at that table with Emma’s family and friends.

As I walked into my house at 6pm my son turned around from the table and shouted “asshole!” I guess my presence startled him at that moment. His sitter reported that he was great all day with the exception of one incident with the dog, but everyone is fine.  I talked about the show a little while Johnny started chanting over me and calling my name. I missed him all day but at that moment I could feel my sadness coming in.

After the sitter left I tried to explain to John where we were. Even at John’s
Age of 12 years old, he would never sit still or stop making loud noises at a venue like the Biograph, which is why we couldn’t bring him.

I said, “Someday Johnny I would love if you could come to one of Emma’s shows with us?” John looked at me and said “I can’t wait!” He must have heard that from somewhere as an appropriate response and used it on me. I actually had butterflies thinking that he may want to do something like that someday. Then, he looked at me and said “Chuck E Cheese?” and I said, “Yes, Johnny you are still going to Chuck E Cheese tomorrow, you earned it”.

He needed to make sure I wasn’t upset with him and he still earned it.

I am grateful John can be pleased with so little. He loves Disney, Chuck E Cheese, black popcorn, Wheel of Fortune and taking baths. I could walk through Target for hours without him asking me to buy him a thing. I could drive across the country and he wouldn’t ask for a thing other than the items I just listed.

It’s what he needs to function I cannot give him. The sensory processing, the moments in his head that he can’t control, the anxiety and fear when he meets someone new or goes to a new place. The ability to control his cursing, outburst and frustration. I can’t always give him a quiet place. We have to go out into the world, it’s a requirement to living.

All the things that are important to me mean nothing to him. For example, being able to go to the movies as a family or checking out the latest kid’s venue. Time spent together as a family. I understand that most kids don’t want to hang out with their family but when they grow up they are grateful for those moments and talk about them around the holiday dinners. They reminisce how mom and dad made them do this and that and how they hated it but are so happy they did now. What will we have to talk about in 20 years? How John stayed home while we went to the plays and movies because John just couldn’t handle it? Furthermore, his uncles and aunts aren’t breaking the door down to spend some quality time with him like they do with the rest of the kids. We are all we have to make memories.

Writing this just makes me even more grateful for Special Olympics! Being a part of something big!

His anxiety, cursing and isolation seem to be the norm these days. His obsession with his schedule is getting worse. I am so grateful for his school where he loves to hang out with his 12 other classmates. However, I am already thinking about his transition to high school and how hard that is going to be for him. I feel like I am always ON, never turning off the worry and anxiety of his future.

Regardless of John’s struggles #ISeeYourLight

I see the beauty inside. The boy that makes people laugh. When he arrives at school and has two of the crankiest people on earth glowing when they see him coming. He changes peoples. He makes people stop and look up and be grateful. So that is what I will talk about at the table in 20 years’ time. How my extraordinary little man changed so many lives just by being present in his own unique way. #ISeeYourLight I love you Everyday!

John 22John 2017

Advertisements

#Goodnightsweetworld 

Every night I say, “good night, sweet dreams, I love you every day” 

Tonight his response: 

“Barbara,  are you freaking kidding me?” 

Me: “Nope, I still do”

#love 

“I’m glad I got cancer”

I rarely hear woman say “I wanna be just like my mom someday”.  We hear boys say they want to be just like their dads when they grow up, why don’t woman say it more? Such different relationships…

Today, I yelled at John. You might think I don’t yell a lot, maybe it was just today? No, I yell all the time. I think my normal talking voice in this house is yelling. I cannot have a conversation without talking over John and his technology devices going off so I scream “Turn it down” mid-sentence and keep going. Newcomers to the Murphy household are usually shell shocked and wondering how I can even have a conversation and retain anything we talked about.

Anyway, I started off talking about mothers. I spent years praying to not be anything like my mom. Now I wish I was like her. She was a mother that had a lot against her. She raised four very different kids in a mostly unhappy marriage as a stay at home mom. After her divorce she went out to work as a bartender, later getting a job with the Chicago School system doing janitorial work. Her relationships with her kids were strained because we were little assholes. Except for my older brother Teddy, he was and is non-judgmental and empathetic. I know he was towards our mother, not so much with others. Even though I believe he really is but tries to play it off like he isn’t. He is generous and is always helping people. A friend of his went to prison and Teddy was the only one who kept in touch with him, sent him gifts, money, etc.  When I asked him why he even bothered he said, “Why not, the guys got nothing else going for him”. When that friend got out of prison, less than 3 months later he died of a heart attack. I think about how that poor man died when his life was getting ready to change for the better and how grateful he was for Teddy’s correspondence all those years.

My mom was diagnosis with brain cancer when Johnny was a baby. I was devastated and so was Teddy. Even today I feel these overwhelming waves of guilt in me for the absence in my mother’s life for so many years, it was intentional absence. I was so mean and judgmental. Unfortunately, it took an illness for me to have any empathy for her at all. She had cancer for 6 years before she passed, we had an amazing 6 years filled with great memories. I would hop on a plane every 3-6 months to visit her in Ireland where she lived to spend a few weeks with her. Teddy and I would take turns going, sometimes going together. Mom told my cousin Mikey one day, “I’m happy I got cancer. I don’t think I would have known how much everyone loves me”.

When he told me that my heart was broken for all the lost years. All the years she wanted to talk to me and I wouldn’t. All the years I didn’t even know why I was mad at her other than other family member’s influences. That day I vowed to live a life where there was no question about love. People I love know I love them because I tell them when I see them. Even if they think it’s strange, I say it. Last weekend, we went to John’s ECMO reunion to celebrate his survival. We have kept in touch with all those folks for over 12yrs. Danny, the ECMO specialist that cared for John, is a friend we see rarely but still considered a friend because of his role in our lives. As I was leaving I told Danny “I love you, see you next year”. He said he loves me back, but I didn’t’ expect that. I truly love him for his role in my son’s life, his survival.

When the feeling rises, I say it. On the other hand, people I dislike usually know it, too. Not because I tell them. Because I create boundary’s that keep them at a distance. For example, my sister and I haven’t seen or talked to each other since Dad died. I do not like her, how she treats her family or how she treats other people. I don’t want to judge her, condemn her or save her, so I create the boundaries. Some people need to save themselves and my role in their life may be only to watch me from afar or not.

I remember mom yelling at us when we were kids. Once she chased me around the front room with a broom and almost made contact. I probably said something disrespectful.

I hate that I yell at John. Sometimes I can’t help it. I always apologize to him without the “but”. I remind myself that I am teaching him how to be treated. We make mistakes, we make amends, we forgive, we pray and we live in gratitude. Thank God for the ability to take time outs, restart our day and thank god for LOVE!

At the end of the night he has never turned away a hug or kiss, for that I am grateful. At the end of the night he knows I love him!