Gravestone: “He worked a lot”

'Thanks for all your hard work.'


I have never seen a grave stone that said “He worked a lot”

I’ve looked, too!  I searched google for an image using those words and other variations and found nothing. Not even as a joke, I guess it’s not funny.

I hear stories all the time about people that retire and start to lose their ability to live life due to illness or medical conditions. We hear it all that time! It’s a reminder that we need to live life as we age, not when we age.

I own a business. As soon as I found people that can work for me without me standing over them I started taking weekends off to be with my family. It took almost 2 years but it was my goal. There are weekends I might have to work here and there but the gist of it is, I take time for what is important to me.

I realize not everyone can just take weekends off. But, we can find what’s important to us, your calling in life, and do it. If working is more important to you then do it. If spending quality time with your family is, then do it. If walking your dog is, then do it! It’s about the everyday life and what you make of it. It’s not about working your ass off every day so you can retire, you may not even make it to retirement.  Show up for your life!

As we age, different things become more important to us. Each era of our lives creates a different story. For example, in my 20’s it was about relationships and getting married, in my 30’s children and family, my 40’s is family, school and work. I try hard to balance it all. But, for me throughout my life family has always been important to me.

I don’t get to see my brothers much since Dad passed away. Monday, my younger brother came by my shop with dinner. He brought Columbian Empanadas from a place he seen me check in on Facebook at. He knew I liked it and wanted to try it himself. I was beside the moon that he wanted to spend that time with me and made the time to come see me. I need to initiate those meet ups more myself.

When a friend asks me out to lunch, when my son tells me he loves me without me saying it first, when a neighbor asks us to dinner, the random text just asking how I am, a sincere display of love, feeling needed and loved…those are the things that are important to me, today.

What is the most important thing in your life right now?

via Daily Prompt: Calling



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

Anxiety got me like WTF?!?!

Anxiety just creeps up on me like a bad wedgy. One minute I’m happily dropping my son off at school next minute I’m running scenarios in my head about the things that COULD happen to him after I leave.

School nurses that show up 2 hours late and seem to think nothing of it are assholes.

My son goes to school with oxygen and a nurse is usually there to keep an eye on things. She needs to make sure the tank is full, that he is breathing ok, that he takes breaks when needed and that his oxygen concentrator battery doesn’t run out.

It’s not that hard.

So when a nurse arrives 2 hours late and manages to let the battery on his oxygen run out during her shift – the main job she has – I get angry. Anger is usually my first emotion. The program teaches me that anger stems from fear or hurt.  I have to ask myself why I am angry. I am angry because the nurse isn’t doing her job! Which spirals me into the scenarios of what could happen if John doesn’t have his oxygen.

It’s a vicious cycle that I need to stop myself in the middle of and chant “Let it go, let it go”.

What I do have control over is whether that nurse comes back. I also have control over teaching the aides and teacher what to do if a nurse doesn’t do their job or doesn’t show up.

I have control of how I react to the situation.

Before I got sober I had 2 personalities; confrontational or isolation

Today, I still have multiple personalities but they come from a better place 🙂 I can pause and live in the solution, right after an anxiety attack. I can stop myself from letting the crazy committee in my mind take over and pray, right after the anxiety attack.

I don’t know if I will ever avoid that anxiety but at least I know I can get through it today with a little more grace and dignity then I did in the past.

Now I just need to pray we find a reliable nurse that cares enough to show up on time. And I will continue to be grateful for the amazing staff at his school that support us!

To teach…or not to teach?

Recently, I have been thinking about going back to school for a degree in Early Education. Since I already have a Bachelors it wouldn’t take too long. I have always wanted to be a teacher. The hours and seasons would work perfect with my seasonal business selling froyo and with John.

Anytime I start thinking about changing careers, making life decisions or anything of that caliber I throw it out into the world. I start talking about it. I truly believe if you put it out there the answers will come. When I mention going back to school to be a teacher most people say, “You could be a Special Ed teacher!!”, like it’s the most exciting thing since sliced pie.

Um, NO!

It’s like a mechanic with a crappy car. He goes to work all day and doesn’t want to come home and take care of his car, too. Just because I have a special ed. child doesn’t mean I would make a great special ed. teacher.

I appreciate all the people that have taken on John and didn’t give up. He went through 5 schools before 6th grade. He had some amazing special ed. teachers and one crappy special ed. teacher (She’s a whole other blog post). But, I don’t think I could do it. I get a real high off of watching kids do “normal” or “typical” things like color, eat, talk, play and breathe. It makes me so happy when kids play using their imagination or when they interact with other children. I would love to be the person to facilitate all this normal behavior. I would also love to be the person to mold these “typical” children into kind, smart productive high schoolers.

So this is me putting it out there, again. I am still on the fence. My brain tells me I am crazy for taking on all this extra work, my heart tells me I could make a difference. I let myself think too much about it and the committee in my head can be a tough committee, not always supportive. I find the most real support, whether it’s for or against, from the real woman in my life. They are the most honest! Sometimes they see things in me that I don’t see, good and bad. When they are brought to the forefront I can recognize the good and work on the bad.

Love my amazing tribe of supportive woman!

Are we breathing?

When John became sick this past year I knew our summer would be spent at home. At the time, I was sad and depressed thinking about all the things Johnny will be missing out on. He won’t be able to attend Summer Camp, missing piano lessons, no more swimming and trips to Chuck E Cheese and McDonald’s for french fries would be limited. As his mom I want more for him. I want him to be able to experience life and enjoy his youth, make friends, play  sports, be happy…

Fast forward three months later, here we are at home adjusting. John and I have been stalking his camp, meeting them on field trips and being a part of the group that he loves so much. We went to the movies, the beach and bowling. I hired a girl to help out so I can run errands, get pedicures and work. She is a music teacher with the Chicago School System. John loves her and she has quickly learned how John works.

Every morning, John and I sit at the kitchen table and eat breakfast, we chat, sing and talk about the weather. Seriously, John is obsessed with the weather and asks every morning about it.

Every afternoon, we do something or nothing. We go bowling, stalk his camp or we sit home and watch TV. This afternoon I came upstairs to write while John watched TV, but we both have our walkie-talkies to keep each other posted on what’s happening in our part of the house.

Three months ago I thought my world was coming to a screeching halt of boredom and sadness. Today, I get to relax with my lil man, sing and write. Far from boredom!

John’s life has a way of slowing my life down and reminding me what is important.

  • Taking time to talk in the mornings
  • Friends and family that take the time to check in on us or visit
  • Living in the present, not worrying about the future
  • Love, without it we have nothing
  • Breathing

Yes, breathing. Part of our routine is also checking his oxygen levels during the day. Its what we say every day, “Take a deep breath John, bring those levels up. Breathe”. It’s what I remind myself to do every day when I am stressed, “Breathe Barbie, everything will work out”. So far, every thing has always worked out…

Chillin with Boss