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!

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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

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?

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

 

10 fingers & 10 toes

January 4, 2008 journal entry

Before my son was born all I wanted were ten fingers and ten toes
I asked God to send me the most special child he knows
I never thought about all the rest…
I wanted him to play like little boys do with his tonka toys
Batman shoes, spider webs and blues clues
I wasn’t expecting what was to come
Quickly I learned, with tears in my eyes, what I needed to know
Your child will be broken and slow
Slow to breath, slow to learn, slow to walk, slow to talk
But, not too slow to love
I learned patience and trust in God, I learned about pride and worries
He gave me the beauty of his smile and the love from his heart
I seen his fear, courage and strength through his tears
I was blessed with the miracle of a child
Before my son was born all I wanted were ten fingers and ten toes
I got what I asked for, the most special child God Knows…

April 2005 on ECMO: extracorporeal membrane oxygenation 

Johnny Born

http://emedicine.medscape.com/article/1818617-overview

 

#Healing

Summer fun is not so fun…

Today is Saturday. I am a business owner on top of a multitude of other titles. On the days I am not going into the shop I always check in with the video cameras to make sure someone showed up for their shift. Today, no one showed up to open the shop. So after getting a text saying she asked someone else to cover her shift but never told me so I could change the schedule, I had to pack up John and head over to the shop to open. This is where I start wondering why I thought I could be a business owner and John’s mom and contemplate closing shop and then slap myself out of it.

John doesn’t like to just get up and go. There is a process, a plan, a schedule that needs to be followed. Today, we were supposed to go to Rosemont at 2:30 for the Special Olympics Ice cream social. Next, home for water balloons. Next, Irish fest. We were not supposed to go to Josi’s at 12:15pm or any time during the day. After throwing his clothes and shoes on, driving to the shop he was pretty pissed.

When we got out of the car he tried throwing his oxygen tank at me. A guy riding his bike passed slowed down to watch. When we started walking to the door he tried pulling the tubing off. An elder man stopped to ask if I needed help. Once we got to the door I knew I needed to literally shove him into the store with tank, lock the door and dart to turn off the alarm. If John heard that alarm our day would be ruined. So that is what I did unannounced to John. John didn’t appreciate the shove but with a shocked look went to sit down at the nearest chair, thank God!!!

Once the alarm was off and doors locked I worked on opening the store while John sat on the chair chanting and screaming at me. “Mom, mom, mom, Get over here right now, I said get over here!” Over and over again. Apparently, I say that to him a lot.

A customer came to the door so I opened warning them that the shop just opened and product isn’t ready for about 5 minutes. I apologized and continued to get the shop ready while John continued chanting his chant. Meanwhile, I was texting everyone trying to get them to come in or friends to watch John, there is no way I can sit here all day with John and tend to customers.

Finally, the newest girl hired said she could make it. Two girls have been suspended and don’t start back till Monday so I didn’t even ask them. One girl was at a baby shower. I fired the girl that didn’t come in. It was the easiest fire ever since she was literally a backup, ironically that couldn’t back us up. I just took her off the schedule and told the team they can no longer use her as a backup. Didn’t even tell her.

When the girl finally showed up I took my phone and sat down next to John at the table he was chanting at. It took all of my strength to not cry. I sat there staring at John, he stared back at me finally saying nothing. I took a deep breath and started chanting to myself “God help me, god help me, god help me”, while holding back tears with my back to the audience at the counter.

Since the last night shift didn’t let me know we were out of strawberries, blueberries, donuts and a bulb was out; it was off to Target.

It had to be Target, because that is the only store John will go to without a fight. I’m just glad all the items I needed were at Target. Mission accomplished, dropped off at the shop and home we go!

On the way home he sat in the back seat the quietest I have ever seen him. So quiet I had to ask if he was ok. His beautiful face just looks over at me with a smile and says “I’m ok mommy, stop asking, I’m ok”.  That his new thing, telling me to stop asking even if I only asked once. Was this the calm before the storm? In my head I am trying to figure out how to keep him this calm….

Cancel Rosemont

Cancel the Irish fest

He’s way off his game.

Home – FINALLY – Kevin comes home early to relieve me so I can go to jewel for dinner, pet store for food and hardware store for a fly swatter! Ahhh…a break for me!

He has his water balloons… all is right with HIS world. Until daddy tell him only 5, not 10. I’m outta here….

I managed not to cry in public, only in my car…

I can’t wait to go to bed….it’s only 4:30pm….

People are texting me asking where we are….no show again.

I’m watching all the other mom-entrepreneurs take their kids to work and be good at it #SmallBizMom…no go here.

#Feeling Sad

#KeepTheFaith

#GoodNightSweetWorld

I tell this story to heal, not for sympathy….I need to heal and others can heal from reading, hopefully. Sharing our experience, our strength and our hope is how we heal. #Healing

tell your story

Why? Grateful?

I just watched John jump onto the couch like he was sliding into third base with an oxygen cannula on. He is so resilient

If you can stop asking Why? You can enjoy what is right in front of you. I am not sure when I stopped asking why this happened to John. I still ask when he gets sick or ends up in the ICU. It’s hard to believe in “the grace of God” and a God that is “merciful” while you’re watching your child suffer, struggling to breath or in pain. It is hard to understand.

For me, I stopped trying to understand. I am grateful for the doctors experienced hands in the operating room, I am grateful for the nurse that gives him pain medicine, I am grateful for the pain medicine. Thank God for breathing treatments and ventilators. Thank God for the people before us that invented these devices so we can live our lives.

I belong to a gratitude list via email with a few friends that live in gratitude. I have a hard time contributing to the list because I feel like my gratitude is too different. However, I do enjoy having a little window into their worlds.  While they are grateful for vacations homes being so airy, the kids getting good grades and having great nannies I am grateful for oxygen, ventilators and finally finding a care provider for him after going through several. I’m grateful for his resilience, determination and strength. I’m grateful for the changes his life have brought into mine. I’m grateful for the sincere people who have crossed our paths because of John. Including doctors, nurses and other parents with special needs children…

I am grateful for love… without it we have nothing.

What are you grateful for?