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


Medical PTSD…Gratitude?

On the evenings I am not working Kevin and I put our son John to bed together. It is always filled with laughing, hugs and kisses. John takes a dose of melatonin every night right before bed that allows him to relax enough to fall asleep on his own. He is a happy boy, especially when he is home.

Daddy takes him into the bathroom for P and teeth cleaning while I go into the bedroom and set up the night light and sheets. Some nights I chase him into the bed pinching his little butt while he laughs and swats my hands away. He throws himself into the bed laughing hysterically, so much so his lips turn blue.

“Johnny stop laughing so hard, your lips are blue, breathe!” as Kevin and I look at each other nodding our heads with the look of “Wow, can you believe this kid”.

Kevin and I lay in the bed with John between us. We laugh at the silliness of John and usually mention how handsome or grown up he looks. Tonight, we mentioned how straight his teeth are and how beautiful his smile is. He has Kevin’s teeth, I had braces.

We say the Our Father Prayer with Kevin’s hand across us both. Tonight, Kevin was rubbing my back. John took Kevin’s hand and moved it away and began rubbing my back himself. We all laughed and kissed good night.

Sobriety brought me here….I am forever grateful for these moments that I do not rush and adore so much.

However, sometimes my mind goes to a dark place. For literally a second, my mind imagines the space between Kevin and I in that bed empty, without John. It gives me a knot in my stomach with a weakness I cannot explain. I shake it off quickly.

Death is something I think of a lot. I don’t do it on purpose. My mind just goes there. Sometimes I wonder if it’s my brain preparing me for the “what ifs”. But, my smarter brain tells me not to think of the ‘what ifs’ and to live in the present. I am not sure how to make these thoughts stop. I feel like it’s a symptom of medical PTSD, from all the years of watching him almost die or struggle to breathe.

I just don’t know how to make it stop…

Daily Prompt: Sympathy (Keep it!)


Sympathy: caring and understanding for the suffering of other

Don’t tell me you have sympathy for me as a mother who has saved her child’s life a hand full of times. Don’t tell me you have sympathy for me when you hear I gave him CPR today or we made it through another seizure.

Don’t tell me how you could never do what I do.

You cannot imagine my feelings or what is going through my head while I gave him CPR – How I cried and prayed he wouldn’t die in my hands. How I screamed for the paramedics to hurry up. You cannot imagine how I felt.

I hope you never know how it felt.

Keep your sympathy, give me your heart. Give me your silence so I know you are listening. Give me your time so I know you care. Give me your prayers so I know you love me. Give me your patience when I don’t return your calls. Give me your love when I am angry.

But please don’t give me your sympathy.

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!

Trust your gut…


I do not usually put the date at the top of my post but this is the day it happened.

It was about 7pm, still day light on a hot summer day. I was working at the shop when two young men walked in.  One was wearing a white dego T-shirt with black Adidas pants that laid right below his buttocks so his dark blue boxers showed completely. The other guy was wearing jeans that hung low but not as low. He had a colorful jean jacket on with a large afro that had an indent on the left side.

The white dego tee guy walked up to the counter saying something. I looked directly at his eyes and said “I do not understand what you are saying?” I always give eye contact to people I feel might be trying to intimidate me. Even if I am scared it makes the other person think twice about my strength. He replied, “I was singing a song”.  I said, “Oh, good”. And I continued working.

The other guy lingered around him looking around, not talking at all. He had a toothpick in his mouth. Dego T guy asked if I give samples of the froyo. I said, “Sure”. And handed him one sample cup. Usually I give people 2 cups but I didn’t feel like these folks were here to buy anything.

They both walked to the back by the machines. Just past the machines is a short wall with a bathroom to the right and a water fountain outside the bathroom. Directly ahead is a door with a sign that says “Employees only”.

Recently in the neighborhood news there was an article about men in groups of 2 or 3 coming into businesses, asking to use the bathroom and sneaking into the employee’s area to steal purses, money or merchandise. Because I was uncomfortable with these boys I watched them closely from the counter.

There was a woman with her two kids sitting at a table near the machines, a woman and her child at the counter and a single woman sitting by the front door. As the woman and her daughter came up to the counter to pay the man with the toothpick went into the bathroom while the dego T guy sampled some froyo. He was taking heaping piles of froyo and reusing the sample cup. I noticed later that he would just let the froyo pump out without even catching it leaving a mess of froyo in the drain trays.

As I was about to ring up the woman and her child I noticed my back door opening. I ran over there and yelled at the man to get out. “You know exactly where you are going, get out of my store right now!”. The man turned around and began walking towards the front door, slowly. The dego tee guy stood there taking more froyo. I turned to him and said, “You get out, too. You two are together. Get out!”. He stood there finishing his generous sample of froyo and told me to wait. I said again, “Get out now”. I was standing maybe 15 inches away from him blocking the machine. I stared right at his eyes while his profile was facing me. He slowly turned to look at me and stared right at my eyes.

I told myself at that moment, “Don’t look away, don’t look away!” In that moment I thought he could sucker punch me right now and lay me flat. I thought of my son John and how sad he would be to see me hurt. I thought of the girls that work for me and thanked God they were not here and I am. I thought about how it was my brother birthday tomorrow and I just want to talk to him. I prayed he didn’t have a weapon. He finally looked away, tossed the used sample cup away and walked towards the door. I walked tightly behind him as he looked back at me twice. I stared at the back of his head as he walked out. I wonder what he was thinking when he looked back at me.

When they left all the tension in my body released. I started to shake. The woman at the counter said “Wow, I don’t know if I could have done that. Good for you”. I rang her up while my hands were shaking, handed her change and said Thank you.

I walked outside to get some air. There was a family sitting outside. They come every week with the kids and order pizzas, froyo and drinks. He asked me if I was all right. I gave the dad a short story on what happened and he encouraged me to call the police. Why didn’t I think of that?  Call the police!

The first set of police arrived fairly quickly. After explaining what happened the police officer asked if I want to file a report. I was confused, still a little shaky and said “I don’t know”.

The officer said, “If you file a report you will need to go to court, are you prepared for that? Also, do you want your business to be known as a place where the police are called? Media and community meetings get a hold of this and news spreads.” All while nodding his head no with his lips pierced together trying to look concerned.

That thought scared me and I said No. They ended up leaving.

About 15 minutes later two different police officers came in. The officer asked what happened. I told him again. He said, “You know we found them in the alley, we think they ditched a gun or a knife but our hands are tied because you didn’t file a report. These boys are from the west side and come down here doing this all the time. They are juveniles.” The officer was angry.

I told the officers I would file a report if they came back. Before they left the officer softened up a little and said “Good job sticking up for yourself. I doubt they will be back. But, if they do make sure you call us!”.

Since this happened I have been thinking about why I make the decisions I make.

Why didn’t I file a report?

Why didn’t I tell the 2nd group of police officers how the 1st group talked me out of filing a report?

I felt manipulated by the first set of cops. I felt like a child being scolded by the 2nd set of cops. In both cases, I was people pleasing. I made a decision based on what I thought they felt was the best choice. Deep down I knew otherwise but did not change my mind. While this was happening I was scared and looking for guidance. I didn’t know what to do but I knew what was happening didn’t feel right. I remember having feelings like this as a child, and at that time I didn’t protect myself either.

Trust your gut. Pause…stop and think about what the right decision is. Sometimes in these situations we can’t stop or pause. But, I wish I had trusted my gut. The most frustrating part of this now are people telling me “You should have…”. Everyone else seems to know what I should have done.

I just have to believe that it’s God’s will that this happened this way. I keep replaying the scenario in my head and thinking of all the bad things that could have happened. I also keep thinking, what if I had filed a report? They would have brought those boys back to the shop for me to identify, I would have had to go to court. Would someone retaliate against me?

I’m glad it’s over but it’s still lingering in my mind. I can’t seem to let go of the idea of them coming back.

You got the BUNZ hun!

Johnny’s BFF is an 18 year old girl named Emma. She is sweet when she wants to be and the polar opposite of that at times. She can’t help it because she has a nuero disability that causes her to lose control. However, John and Emma together is always just hot dogs, McDonald’s and short naps, always happy times.

We have very few people that can watch John for us. Actually, we have two, Erin and Auntie Patsy.  Erin is Emma’s mom and Auntie Patsy is our neighbor from the old house that we lived in for 17 years. She has become part of the family, the only “family” member that has taken on the hard task of learning how to be alone with John. We love her more than words can say, and Erin, of course.

One afternoon Erin had taken John for me while I worked. When I arrived home John had learned a new song.

“Anaconda don’t! Anaconda don’t! Anaconda don’t want none unless you got BUNZ hun!”

I bet that song is stuck in your head now.

We have been shouting it out just like that since he learned it. You have to have the emphasis on BUNZ, with a Z.

In March 2017 John came down with the flu. He ended up in the Intensive Care Unit (ICU) of our children’s hospital for 5 weeks. Thankfully, he recovered and was sent home on 4 liters of oxygen 24/7.

While in the ICU we met a really cool nurse named Katie. I really loved her vibrant personality and genuine smile. As an ICU mom for the past 12 years, I have sat many hours getting to know John’s nurses and vice versa. This nurse told me her story, with hardships and all, while smiling with gratitude. I loved that about her.

When John started to feel better his personality started to shine through again. He’s a clown that loves to make people laugh. He instantly adored Katie and her funny personality. One day he looked right at Katie and said “You got Bunz hun!”. Katie’s eye brows raised with a grin on her face while giving a puzzled look. She replied “Well, yes I do have bunz Johnny.”. Johnny pointed to the top of her head. Katie and I looked at each other laughing because we realized he meant the bun on her head!

After that, every time someone with a bun in their hair walked by Johnny’s ICU room Katie would stop them and ask Johnny, “Hey Johnny, what’s she got?” and Johnny would shout back, “You got bunz hun!”.

He had the entire ICU laughing.

Always making people laugh…

A few weeks later I was pushing John in his push chair into the bowling alley. There was a woman walking in front of us. She was a larger woman with a larger then average bottom and a bun in her hair. Johnny shouted to her “You got bunz hun!!!”

When she turned around I was already pointing to the top of my head saying “He means the bun on your head”.

7 months later I am still explaining the bunz comment to random people….  Ladies with bunz, men too….Johnny will point it out to you. Because he loves bunz!!!



Daily Prompt: A Casual Mom

I have no fancy dresses in my closet. If I received an invitation to a black tie event or wedding I would need to go out and buy something. I have summer dress, jeans, shorts and tanks. I wear underwear with super heroes on them or the cookie monster. I wear sweatshirts over my tanks in the winter because I still sweat a lot. I recently decided to let my gray hair grow free.  I now have long hair that is gray and I love it! I wear jean shorts, leggings and yoga pants, no yoga though! I am always comfortable.

I wasn’t always like this. 12 years ago I had a baby boy, Baby boy Murphy is what they called him in the Intensive Care Unit (ICU) of Children’s Memorial Hospital, now called Robert and Ann Lurie’s Children’s Hospital. He was born with a right-sided Congenital Diaphragmatic Hernia. This is where his liver and bowels grew up where his lungs should have been causing him to be born with partial lungs. He spent 13 months in the ICU after birth, 8 years on a ventilator and 9 years with a tracheostomy. He has Epilepsy since the age of 2. His first seizure lasted 8 hours and only stopped because he received a sedative cocktail that would knock an elephant out. He also has Autism and Sensory Processing Disorder.

His story is long, tragic and beautiful. He is a lot of work and somedays just amazing to be around. I can barely take a shower for more than 10 minutes at a time while we are home alone because he has no sense of danger. I am scared he will walk out of the house or set fire to it.

This morning I pulled out a summer dress because I didn’t have time to do laundry. After envisioning the day which consist of a trip to Chuck E Cheese (because he earned it), a picnic and a festival (if we survive the picnic) I decided to put my knee length yoga pants on, they make my calves look awesome! That summer dress would have tripped me up if I had to make a runner after the little man.

Happy to be casual, working from home, entrepreneur mama ❤

via Daily Prompt: Casual