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

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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…

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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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