One F***ing Pin!

Has it been 2 months?

I am back to college at 43 while taking care of a family and running a business. Blogging has seemed to be put to the side for a minute.

This week my hubs went to his homeland of Ireland to visit family. I am single parenting for 10 days and let me tell you I have never missed him more!

It’s been a long week with my 13 year old autistic epileptic lung child! Medical PTSD and loneliness did Conjure up this week. One lesson learned: Just like step 4, never read IEP goals alone. You need someone with you to balance out the negative and put things into perspective.

He requires so much attention from me that it has been impossible to study. By the time I get him to bed I am so tired I pass out with him.  He loves taking long baths but needs constant supervision in the bathroom. He cannot dress himself independently and eating…whatever! This week has me contemplating quitting everything to stay home with him just to get him closer to becoming an independent productive adult. For Christ sake, he has hit puberty and still pulls his pants off in public because the snow made his pants wet.

I’m not complaining about taking care of my son. I love being with him. We have amazing moments of laughter and sharing so much love that I actually want to live forever with him.

What hurts the most is the loneliness. He has no friends coming by to hang out. My friends or family are not breaking the door down to visit with their kids. This week has brought that to light for me, yet again. I love being around my friends and their kids, but they don’t love being around me when I am with my kid. #TruthBomb

How do I move forward? I have no clue. The summer is approaching and he will miss his Special Olympics friends and Special Recreation Day Camp for the 2nd year in a row because he is on Oxygen.

I need ideas for the summer. I need places to be and people to see. He needs friends outside of mom and dad. I need to see him engaging with other people, learning to behave appropriately and enjoying it.

We could go bowling every day and meet the elderly team we met last year. They loved him, even named their bowling team after him, “One Stinking pin!” and “Oh! Coconuts!” Those are Johnny’s ‘good words’. The originals were “One F$%^ing Pin” and “Oh! F%^$”. It took almost a year to replace those words! (I guess I can’t blame parents for keeping their kids away from mine!)

In the meantime, I will continue to ask around, reach out and ask for help in a network of people I have never met on social media. Hopefully, something will fall into our laps. Part of me knows whatever happens is meant to be. We always seem to be in the right place at the right time. #Blessed

via Daily Prompt: Conjure

 

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Keep Fighting the Fight: A Living Legend

John was born with a rare birth defect called Right-sided Congenital Diaphragmatic Hernia (R-CDH). No two cases are ever the same so treatment can be difficult. When John was born he was given a 10% chance to live. We were asked what religion we were so they could accommodate us in having final rites said. As raised Catholics we had our son baptized the day he was born and his last rites on the same day.

It’s a brutally harsh birth defect that left his tiny little body of only 7lbs deflated, gray and lifeless. They started off by putting john on Oscillatory ventilation that provided 4X’s the normal ventilation and shock his body just to keep it going. When he graduated from the oscillator he went on a hospital ventilator and ECMO (A heart and lung bypass machine). All of these are considered “last resorts” to keeping “Baby Murphy” alive. He was on ECMO for 14 days. They told me he would need 21 days and then we will “see what happens”. 6 months into his life I learned that ‘see what happens’ meant we would have to stop life support. I always said my ignorance to all he hospital terms and procedures is what kept me from breaking down, I had no clue these were last resorts at the time. He spent the first 13 months of his life in the ICU at Children’s Memorial Hospital.

7 months in, he became addicted to Ativan and Methadone. Weaning him off those meds was surreal. With each wean of the medication he would shake and cry uncontrollable. They finally put him on Ketamine to get him off the other two. I learned Ketamine is what they give drug addicts to get them off their drug of choice.

8 months in they moved him from the Neonatal unit to the Pediatric ICU. He was growing and needed doctors that could keep up with him. No longer a baby, he graduated to Pediatrics.

He was always fighting infections, virus or just being stable on the vent. Our goal was to get him on a home ventilator so he could go home. However, the support of a home ventilator isn’t as strong as a hospital ventilator. So he needed to stay in the ICU until he was strong enough to transition over.

At 11months we have a team meeting. The head of the Pediatric ICU said “I wouldn’t doubt it if he is here another year”. With that statement we set up house in the ICU. I started bringing all the toys that family and friends bought for him to the room so we could play or learn every day. I played with him in that little box with windows every morning, watched him nap, feed him, loved him and somedays just sat there watching him while he was in an induced coma. I resigned to the fact that this was our second home. Because he was MRSA positive we were not allowed to venture out into the halls or waiting room. It was literally our prison cell. I used to refer to sitting in the room as being like zoo animals. Please would walk by, look in while they passed and smile or not smile. I would smile back or pretend I don’t see them. If John was having a bad day sometimes they would stop in, poke their heads in and ask how we were. I hated that? I hated that they asked “How are you?”, that always set me off into tears because I wasn’t good and I didn’t want to talk about it.

Our nurses were our friends. We chatted about life. I knew if they were married, single or gay. I knew if they liked their parents, if they were in school or if they exercised ever morning. I knew if they were training for marathons or loved sitting in front of the TV every night. They knew a lot about us as well. They were family, there every day with us helping us to stay positive, loving us in their way.

12 months in I felt there was something different about John. John would need to be in an induced coma every once in a while to let his body rest. He was sometimes his own worst enemy, fighting everything. Letting his body relax allowed him to get stronger for the next battle. This time he seemed stronger to me. I pleaded with the ICU team to try the home vent again. They were resistant but finally agreed to try while keeping a very close eye on him.

The first day was always ok. The second day he was still ok. A week later everyone declared it was a miracle he was still on the home vent. I knew he was different. I knew it!

A month later, after 13months in that place, he came home. He was on pressure control and pressure support ventilation, 30% oxygen, a feeding tube and full of cheeky smiles and love. We were so happy to finally be bringing our boy home. When we arrived home there was a parade of family and neighbors outside our house. The house had a banner covering the front saying “Welcome home Johnny!” It took 3 people, Kevin, the nurse and myself, to carry him into the house safely. Everyone stayed outside crying and laughing with tears watching John arrive home for the first time.

3 days later we were in the ER. After that we made almost weekly ER visits for a few months. But he was home and striving. We were back in the ICU at least every 3 months for a few week visit because of illnesses. With every visit we seen the same group of nurses, doctors and therapist from his first 13months. He was like a celebrity coming to visit. Everyone wanted to see John Murphy, the living legend.

Over the past 12 years so many babies have lost their battle to CDH. This blog post was inspired by another lose, less than 2 years old.

We had our uphill battle with CDH but we also know it could have been a lot worse. I personally struggle with the fear of what will happen if he gets sick again, I call it medical PTSD.  Sometimes I wake up in the middle of the night in a panic to check if he is breathing. He still sleeps in my bed. Every night when I come home from work the first thing I do is go into our bed and check if his chest is moving, without waking him up. When another CDH baby earns their angel wings I panic where stand. Last night, I was at work and had to hold back tears when I heard. I had to facetime John to make myself calm down internally.

I cannot explain why these things happen but I am so grateful that it happened to us. John has changed our lives for the better. He has brought people into our lives that we never would have met. These people have added so much love and gratitude into our lives. He also reminds us to remain grateful, laugh often and to never give up!

#KeepFightingTheFight #OnJohnTime #InYourFaceCDH #Love #BeGrateful #KeepTheFaith

#ALittleStrongerALittleLonger

Daily Prompt: Legend

Boston Hospital: CDH Research

 

 

 

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…

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.

Anxiety got me like WTF?!?!

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!

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!!!