Daily Prompt: Sympathy (Keep it!)

Sympathy

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.

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What’s your love language?

Last night, I wrote a long resentful angry blog about my partner. I did not share it with anyone. Even last night in the midst of my anger I knew it was unfair and I was just venting. I am so grateful for my restraint of pen and tongue these days. Makes life so much more fun and full of gratitude.

This morning I read this blog:

https://12stepwork.com/2017/08/27/success-in-relationships/

Right after crying about feeling left out and unloved…

“… it’s not anybody else’s job to “make” me feel better or different… whenever I’ve left the job of “Make me happy!” up to someone or something else, it ends up causing me a lot of needless suffering… happiness is an inside job.” – Mike Stewart, Life Lover

What a great reminder. My marriage can be lonely sometimes. There is this site that talks about our “love Languages”.  How we show people that we love them. It’s hard when you are with someone that doesn’t speak your love language. You have to constantly remind yourself that you are enough and this is the way they show it.

http://www.5lovelanguages.com/

I took the test.

My results: Words of Affirmation

Actions don’t always speak louder than words. If this is your love language, unsolicited compliments mean the world to you. Hearing the words, “I love you,” are important – hearing the reasons behind that love sends your spirits skyward. Insults can leave you shattered and are not easily forgotten. Kind, encouraging, and positive words are truly life-giving.

The tight runner up being “Quality Time”.

I am pretty sure that my partners love language would for me would be:

His Results: Acts of Service

Can vacuuming the floors really be an expression of love? Absolutely! Anything you do to ease the burden of responsibilities weighing on an “Acts of Service” person will speak volumes. The words he or she most want to hear: “Let me do that for you.” Laziness, broken commitments, and making more work for them tell speakers of this language their feelings don’t matter. Finding ways to serve speaks volumes to the recipient of these acts.

He likes to fix things for me, build new things and cook. Just tonight I mentioned that I need a new shelf put up at the shop and his eyes lit up while saying “I’ll be by tomorrow to take a look” And he will be by, I guarantee it.

After 24 years together, I am not always happy. As I am sure he isn’t as well. The hardest part about marriage is growing emotionally together. When one person isn’t growing emotionally and the other is, it makes for a tough time. The person growing has to find ways to compliment themselves and feel good in the space they are in. I do this by going to meetings, meeting other woman that can help me grow and talking to other woman that may feel the same way. It lets me know I am not alone and that the negative feelings shall pass. Thank God those negative feelings pass, with the help of some friends.

Take the test, tell me what your love language is.

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Social media addict?

Yesterday, I made the decision to remove myself from social media.

Yes, I did….

I deactivated my Facebook account and deleted my Snapchat.

I didn’t have an Instagram or twitter.

However, I do have accounts in all of these for my business.

On a personal level, I am not longer connected to social media.

AND I FEEL FABULOUS!!!

At first, I thought this was going to be hard. How will I survive without seeing everyone’s lives happening before me? How will I make it through a day without seeing how everyone’s first day of school was or how that girl in Bloomington is doing with the new baby. How will I make it without knowing how Ed the coffee guy managed to make it through the Park Ridge Farmers Market or how Bob from California is enjoying his new puppy?

This is how I did it. I replaced that time scrolling through social media with ME time. I looked at my son while I was talking to him. I asked him questions instead of nodding yes while responding to a post. I cleaned the oven, which was pretty cool! I did an amazing amount of marketing on milkshakes for my business and arrived into work early without being tired. While at work I read a book during the slow times and did a little extra cleaning.

It all seems so normal but for me it isn’t normal. I spent way too much time on social media. Doing all these extra things personally and professional has me feeling empowered and ready to tackle some more tasks. That’s crazy!!!!!

Last night I went to bed earlier then I usually do and actually went to sleep!  Like within 15 minutes. That’s unheard of!

This morning I woke up before the alarm and felt great.

I am pretty sure I was addicted to social media. Without it I get a little itchy, I want to just take a quick peek. I pick up my phone to click the big F (that’s F for Facebook) and for a second panic that it isn’t there. But, it’s getting easier and I am looking less.

Another reason I quit social media. It was helping me to build up resentments. I spend a lot of time with my son at home because autism doesn’t let us enjoy day trips out like most families. In addition, his chronic lung disease and oxygen requirements make it hard to just hop on out the door. Watching these assumable normal families enjoy the last few days of summer vacation was making me sad, not happy. Watching stranger’s lives that have no part of my daily life was making me resent them.

Without those visuals I can focus on the gratitude. The beautiful smile and hardy laugh my son enjoys at home. Our everyday hot dog lunches and “black popcorn” with water balloons by the dozen. The chronicles of the Boss (our puppy boxer) and homemade meals (not instagramed or facebooked) by my super BFF hubby! The best part are the text messages from the people IN my life with pictures of their kids first day at school, letting me know they are traveling for a sick family member or just asking to meet for lunch or coffee.  The important stuff!

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

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…

Practice the pause

Practice-the-pause.-640x640

Sunday will be my father’s birthday. He would have been 76 years old. Sunday is also the day we moved into our newest home, one year ago. I feel like that was a sign. Dad always wanted us to move into a smaller home and take care of ourselves first. He said we were always taking care of other people kids. He called my house “Sunshine Rehab”. When he was in the hospital, I texted him a picture of his new bed all set up in the living room of my old house. The house was very large with 5 bedrooms and 3 ½ bathrooms. The living room had no other furniture in it other than Dad’s bed and anything else he needed. I used a folding wall to give him privacy. We wanted him close to our everyday activities so he could see what was happening around him. Not in a room with a window facing the alley or a neighbor’s house.

My biggest regret when it comes to my father was talking to him like he didn’t know anything. With the tone of a snotty teenager that thinks they know it all. As he aged he asked questions I deemed as stupid or uneducated because I knew the answers. I was impatience and judgmental. Why I thought I knew more than a man that lived more than twice my life span is beyond me.

This morning as I was cleaning up dog poop in the yard, no doubt with a puss on my face, I was listening to my neighbor’s 40 something year old son talk to her like she didn’t know anything. He was explaining things like she should already know. He was aggravated and snappy. A familiar sound since I talked to my father that way many times. As we age it’s hard to be patience with the elderly, until they are dying. My neighbor wanted her son to fix something mechanical. He was mad that he didn’t understand what she wanted and snapped, “I’m not a mechanic”. This woman is in her late 60’s early 70’s, came from Poland by herself with one child, started a family here in America working several jobs. She tells me stories how she did everything because her husband was not good at things or just wouldn’t do it, like mowing the lawn or fixing the car. She dropped the kids to sitters so she could work a 12 hour shift to help put food on the table. She loved her children and always made sure they had what they needed. One child lives next door to her now, which is the son that was talking to her this morning, the other son lives with her after his divorce. Her advice to me often in the last year is, “Don’t start doing things, then he will stop doing them because he knows you can. Let him mow the lawn it will keep him busy.” She would always add “trust me”, with a thick polish accent.

I wanted to reach over the fence and tell him to stop talking to her like that. I wanted to tell him he was going to regret it someday. One day he will hear someone else talking to their parents like that and a flashback will come in reminding him of how disrespectful he was to his mother. He will regret it and feel a sadness. He will pray his kids never treat him that way and that they respect the life he lived, for them. I know you love her. Because I have seen how you take such great care of your own kids.

While Dad was alive I wish I practiced the PAUSE more often.

Pause…Let him be right.

Pause…let him tell you what to do.

Pause…let him feel in control of his home and life.

We are teaching our children how to treat us when we are elderly.

Pause…and think about how much you love them.

Happy Birthday Dad! I hope you know how much you were appreciated and loved. Even if I was always right (wink wink). I love you every day!

Dad’s first selfie ❤ He was 72, always learning new things!

Dads first selfie