#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

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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…

I can’t deny…

Six years ago I was asked to write about the positive aspects of raising a child with complex medical issues. This is the article I wrote that was published on an online magazine called Complex Child.

http://complexchild.org/articles/2011-articles/october/extraordinary-little-man/

Looking back at this article reminds me of how far John has come. Day to day life can get me wrapped up in rushing, taking on too much and wishing John was doing better medically. I get wrapped up in the future instead of living in the present. I literally give myself anxiety thinking of scenarios that can happen if things were different. Things that probably will never happen consume my thoughts during the day.

Before I seen this on my memories news feed via Facebook I was talking to a friend about how negative my thoughts have been. Re-reading this was a blessing. A reminder telling me to STOP, breathe and smell the flowers right in front of me. Find the gratitude in the life I have today, full of oxygen tanks, bowling, Chuck E Cheese and all beef kosher hot dogs. Find the gratitude in the people around me today. The teacher that never gave up on him, the lunch lady that showed up to his birthday party and the students that sent him cards at the hospital! Be grateful for the party invites even if we can’t go, the friends that call to check in even if I can’t answer and our chosen family.

I cannot Deny  Autism, Chronic Lung Disease or Epilepsy. It will always be a part of our lives, but I will not let it control my thoughts!

What a great way to restart my week!

 

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

What’s Next?

It’s been an autistic kind of day…

This morning John refused to talk to me unless we used the walkie-talkies. I enjoy when he does this because it encourages him to use proper sentences and good words. He keeps the volume so low on the walk-talkies that we can’t hear each other. However, we are standing right in front of each other. I believe the sound of the voice through the walkie-talkie causes a sensory issue so he keeps the volume low.

On the way out the door an older man walking a huge old German Shepard was walking by. John started chanting “Fuck, fuck, fuck, fuck…” over and over again. The man stopped and looked at us shocked. I quickly looked at him and said, “I’m sorry, he’s autistic, he’s just nervous”. The man gently said, “I can leave”. I said, “NO, we see you all the time, its ok. He has to be Ok”. All while John was chanting “Fuck”. The man said to John, “Hey John, this is my dog Jake”. John stops chanting and looks in their direction and says, “Jake, like Jake and the Neverland Pirates. Jake, Captain Hook, Mr. Smee, Sharky, Izzy and Skully.” The man responds, “Oh Skully, yeah I like X-Files, too”.  Next run in with Old man and Jake should go a little smoother.

We went to the last day of camp’s talent show at Indy Park. John is so well behaved at Indy it literally has me stumped. I have no clue why. Maybe because he loves it there so much. We spent an hour there listening to the team, greeting everyone and sitting watching the show. It was the quietest he has been all year so I really took advantage of talking to other adults without interruption. It was amazing!

As we were leaving it took everything in me not to cry before we got to the car. John loves this place but cannot attend because of his medical needs. They do not provide nurses and I can’t stay with him. I was sad because Special Olympics starts in September and he will not be there. I was sad because he is missing out on so many things that he loves, where he feels the most comfortable with the friends that make him feel normal and loved.

When we arrived home I let him eat “black” popcorn, didn’t feed him dinner and sat my depressed ass on the sofa. I was emotionally drained from having a good ugly cry in the car on the way home. John asked to go downstairs to play Wii. I was all for it, but didn’t follow him. I wanted to see if he could do it himself this time. He has seen me do it a million times.

I waited…I got lost in my phone…I waited a little more….got lost in my phone a little more and then popped up thinking he was way too quiet. Ill head down to see what’s up.

Scene: Our basement is small so the doors are pocket doors that slide into the wall. The bathroom door was half open with oxygen tubing trailing out. The smell of shit was in the air. I slowly peek in to find a few balls of shit on the floor, a little on the wall, all soaking in a pool of pee with his jeans and underwear laying on the floor soaked. John is sitting on the toilet humming and chanting “what’s next, Mommy?”, the question he has been asking all fucking day, while splashing his feet in the pee.

I managed to get it cleaned up while he sat on the toilet. I was amazed that he didn’t move off the toilet. I think he knew this wasn’t right and just wanted to sit there till it was gone. Kind of like what I want to do when I do something wrong….maybe it will just disappear?

All cleaned up, he jumps on the couch to play his Wii asking “what’s next?”  The bathroom is probably cleaner then when we first bought the house, BONUS!

My character defects like to creep in unintentionally. One of them is impatience and anger. Today, it didn’t’ happen. I only felt sadness. I feel like that is emotional progress…feel the feelings, walk through the fear, and keep the faith….

All day I have been listing off in my head the autistic quality’s that my son has.

The repetitive asking

The swearing

The need for a schedule

The lack of understanding of danger

He is intellectually disabled

He is beautiful, smart and so loving

Whats next blog

This is the face I love every day. It’s the face after the storm, after the hardship and after the madness. It’s the face of love and gratitude. He puts his head on my shoulder while patting my back saying “Gracias, mommy”. While we are just sitting there, after the storm. He puts on a hardy laugh while saying “I love you mommy”, just to see us laugh, after the storm. At bed, he asks one more time “What’s next?”, tonight the answer was “Tomorrow is Saturday, Chuckie Cheese because you earned it!”. He responds. “I earned it!” while his 12 year old body wiggles so hard with excitement.

#GoodNightSweetWorld

And tomorrow we will do it again…

Strategic thinking…

Today is neuter day for Boss, the dog. Poor little guy was so confused this morning. “Why aren’t you feeding me?” He tried to eat the flowers Kevin brought me over the weekend. I had placed them in a vase on our living room corner table. A table that was actually a bedside table for the huge bed and room we had at our last house. We downsized a year ago and life has never been so free of useless crap!!

Anyway, a neuter means a trip to the vet. It’s just Johnny, Mom and Boss. I have been planning my strategy to get out of the house as smoothly as possible since last night. I changed the plan a few times. At the end I did it a completely different way. Which means all that planning, scripting and thinking was a waste of time. Well, that’s how I roll when it comes to thinking.

I put Boss outside so I could prop the front door open without him making a runner. I was just praying John didn’t let him in while I was doing it. He is a slippery one that Boss. With the door propped I can get the push chair, lunch bag and back pack out the door in one pass and into the car. Return, let boss in and get the boys out the door. I have Boss’s leash in one hand and John’s oxygen tank in the other. I use one hand to guide John into the direction of the door while Boss pulls me to the door. It’s a funny scene.

Once at the car I get John in and walk over to get Boss in. He needs to be picked up into the car since I have a high SUV and he’s still too young to jump up. He doesn’t like getting into the car. Probably because the only time he gets in the car is to go to the vet. This trip will definitely be the final straw for him.

On the way into the vet office the strategy is the same but reversed. Johnny and I agreed he was working for 10 water balloons if he behaves in the office. When we arrive to the front door I opened it too soon and caught Boss’s paw. He made a loud dog crying sound at which time John chanted the F word at least 20 times. John does this anytime a dog barks or cries. I waited till John was done chanting before we walked inside. Once inside John was screaming at the dog to get down in a “level 4” voice. Level 2 is normal talking voice, which I encouraged him to use but this seemed useless. I began taking water balloons away, “9 balloons, 8 balloons, 7 balloons…”  With each balloon he decreased his sound level. But, it went right back up as soon as Boss became excited or jumpy. The receptionist at first was a little shocked by the noise but realized john is Autistic. I was so impressed with their acceptance and understanding. The one receptionist immediately put us into a room, hoping it would help John relax a little. In the room he became more anxious and aggravated with Boss’s level of excitement.

Finally, the vet came in to give me the estimate and papers to sign. We were out of there.

At this point, John lost all water balloons so we headed home to wait for bowling at 11am.

On the way out the door of the Vet John said, “Scared”

I asked him “Why were you scared?”

“Dr. Lestrud”

Dr. Lestrud is John’s Pulmonary Doctor. I believe John thought he was going to the doctor for himself.

When we got into the car I sat there for a few minutes trying not to cry. I wanted to cry because the people in the office were so nice. I wanted to cry because John thought he was going to the doctor. I wanted to cry because John didn’t feel safe and I didn’t prepare him for the Vet visit. I wanted to cry because this was just so overwhelming.

I cried because this was what I seen….

John at Vet

You wouldn’t event know how hard the last 15 minutes were by looking at him. He is in the car, safe and content. He knows he is going home where he is safe and happy.

How does a parent prepare their child for the hard world when they can’t get them out into it?

Shut the front door…

A few post back I talked about how much I yell…

Today, I reached a higher octave. Picture this…

We are on the speaker phone with daddy. Johnny is talking about how he wants water balloons. Daddy is telling him we don’t have any, we will get some Sunday at Costco.

Costco sells these water balloons that are already rubber banded onto a stick that fills 60 balloons with water at a time using a hose. It’s a far cry from the one balloon at a time using the steel water spout out of the side of the house 20 years ago. It only takes seconds to fill 60 balloons now!

When john realized he isn’t getting any balloons at that very moment he gets off the couch, walks towards the back door saying “Son of a Bitch!”

I get up, trip over the dog, mumble “Oh Shit!” and catch myself with the bottom of my stomach dropping out from under me while Kevin is still on speaker phone, laughing.

I missed the opportunity to discipline John for swearing while I sat there on the floor holding my chest from the scare…and swearing.

I finally say Good Bye to my giggling husband and go over to the kitchen to turn the kettle on for a cup of coffee. The kettle sits on my kitchen counter right in front of the window overlooking our deck. The deck has a hammock, a small 10inch deep pool for john’s water balloons and the dog house Kevin built. The hose is hanging over the deck railing ready for some water balloons. Just as I turn the kettle on, John picks up the hose, points it towards the open deck doors and full blast hoses down the inside of our house.

I scream, “Stop, put the hose down!” I can’t get outside without getting whacked in the face full force with “Jet” setting hose action so I stand there screaming, “Put the hose down now John!!!!’.

It took a few screams. When he finally put the hose down he just looked at me and said “Water balloon?”

I barked at him to get in the house. We were literally 5 minutes away from leaving to go on a Chuck E Cheese playdate with his friend Lucy from Special Olympics. I threw some towels on the floor, put the dog in the cage and packed him into the car to leave.

I figured when I get home the water will either evaporate from the heat or I can just pretend this never happened.

I sincerely wonder what my neighbors think of me…

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