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.
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!
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!
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.
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!!!
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 ❤
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
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…
This afternoon John has a doctor’s appointment with his pulmonary doctor, Dr. Lestrud. He was been following John for 12 years now, since John was born. Our relationship hasn’t always been sunshine and daisies. We have learned having and keeping a doctor is hard, like any relationship.
Back in the day when John was on the vent, oxygen, feeding tube and 13 medications 3X a day I would call Dr. Lestrud my “bad boyfriend”. I needed him in my life, but I wish I didn’t. He never listened to me and doesn’t call me back until I start crying.
It took a few mistakes and steps back for him to start hearing my suggestions. I vividly remember talking to him on the phone one afternoon crying because John was home sick and not improving. I was upset that it took so long for him to call me back. I was upset that the medication he was using wasn’t helping and that he wouldn’t prescribe a steroid to help him. We talked for about 15 minutes, I stopped crying, he apologized for making me feel unimportant and we agreed on a plan moving forward. Which if I remember correctly worked out well. I rarely cried when I called him but this time I had reached a limit. I believe he knew that and took action to make the situation a little easier for us.
Ironically, his wife, who is his 2nd wife, was a nurse in the pediatric intensive care unit (PICU) and took care of John at some point. They have 4 kids together, he has 4 other kids from his first marriage. I often wondered if he was this apologetic as a husband as he was with me that day. But, that would be getting too personal with the doctor.
I’m not saying I was always right. He needed to trust me so he can treat my son and I needed to trust him. There is a balance between what is medically right and what I want. Conversations need to be had, respectfully. I don’t know what medications he needs. But, Dr. Lestrud doesn’t know either unless I can articulate what is happening to John in medical terms, with less emotions. Mom’s with chronically ill kids get a crash course in medical jargon and pick it up quickly.
Over the years I have learned to take the emotion out of my communications. It’s not always easy and I didn’t always do it well. But, I did learn that when I can articulate our needs without crying, name calling or being passive aggressive we get better results. This applies in advocating for education, medical and social needs.
When John first came home from the hospital he was going to at least 5 appointments a month. Every appointment I thought there was going to be some great revelation or milestone. Most cases I was disappointed. Most appointments were the usual nurse’s check in (weigh, temp and blood pressure), sit in the room for almost an hour because they over book, see the doctor for 15 minutes and schedule the next appointment for 3-6 months later. Eventually we were told to come back in 6 months and that seemed like a milestone. 6month!!! You mean not 3 months??? Yeah!!
Today, we are going to see Dr. Lestrud after 3 months to talk about his oxygen needs. I still think something amazing will come out of this, but deep down the little committee in my head is saying “STOP IT, you know it will be a meet and greet and a “keep me posted on his progress at home” visit.” That’s what I get for knowing my son so well, for advocating for him so well all these years. I get a “keep us posted” from the doctor. (Smile) That sentence seriously gave me butterflies, yes that’s me patting myself on the back, after 12 years. Yes, I am patting myself on the back.
Slow and steady is how we roll
Dr. Lestrud explained what a good wean looks like and we set a plan. Wean the liters from 4 to 3 and see how it goes. We both agreed we want him to start school in September with or without the oxygen.