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

 

 

 

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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!!!

 

 

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

 

“I’m glad I got cancer”

I rarely hear woman say “I wanna be just like my mom someday”.  We hear boys say they want to be just like their dads when they grow up, why don’t woman say it more? Such different relationships…

Today, I yelled at John. You might think I don’t yell a lot, maybe it was just today? No, I yell all the time. I think my normal talking voice in this house is yelling. I cannot have a conversation without talking over John and his technology devices going off so I scream “Turn it down” mid-sentence and keep going. Newcomers to the Murphy household are usually shell shocked and wondering how I can even have a conversation and retain anything we talked about.

Anyway, I started off talking about mothers. I spent years praying to not be anything like my mom. Now I wish I was like her. She was a mother that had a lot against her. She raised four very different kids in a mostly unhappy marriage as a stay at home mom. After her divorce she went out to work as a bartender, later getting a job with the Chicago School system doing janitorial work. Her relationships with her kids were strained because we were little assholes. Except for my older brother Teddy, he was and is non-judgmental and empathetic. I know he was towards our mother, not so much with others. Even though I believe he really is but tries to play it off like he isn’t. He is generous and is always helping people. A friend of his went to prison and Teddy was the only one who kept in touch with him, sent him gifts, money, etc.  When I asked him why he even bothered he said, “Why not, the guys got nothing else going for him”. When that friend got out of prison, less than 3 months later he died of a heart attack. I think about how that poor man died when his life was getting ready to change for the better and how grateful he was for Teddy’s correspondence all those years.

My mom was diagnosis with brain cancer when Johnny was a baby. I was devastated and so was Teddy. Even today I feel these overwhelming waves of guilt in me for the absence in my mother’s life for so many years, it was intentional absence. I was so mean and judgmental. Unfortunately, it took an illness for me to have any empathy for her at all. She had cancer for 6 years before she passed, we had an amazing 6 years filled with great memories. I would hop on a plane every 3-6 months to visit her in Ireland where she lived to spend a few weeks with her. Teddy and I would take turns going, sometimes going together. Mom told my cousin Mikey one day, “I’m happy I got cancer. I don’t think I would have known how much everyone loves me”.

When he told me that my heart was broken for all the lost years. All the years she wanted to talk to me and I wouldn’t. All the years I didn’t even know why I was mad at her other than other family member’s influences. That day I vowed to live a life where there was no question about love. People I love know I love them because I tell them when I see them. Even if they think it’s strange, I say it. Last weekend, we went to John’s ECMO reunion to celebrate his survival. We have kept in touch with all those folks for over 12yrs. Danny, the ECMO specialist that cared for John, is a friend we see rarely but still considered a friend because of his role in our lives. As I was leaving I told Danny “I love you, see you next year”. He said he loves me back, but I didn’t’ expect that. I truly love him for his role in my son’s life, his survival.

When the feeling rises, I say it. On the other hand, people I dislike usually know it, too. Not because I tell them. Because I create boundary’s that keep them at a distance. For example, my sister and I haven’t seen or talked to each other since Dad died. I do not like her, how she treats her family or how she treats other people. I don’t want to judge her, condemn her or save her, so I create the boundaries. Some people need to save themselves and my role in their life may be only to watch me from afar or not.

I remember mom yelling at us when we were kids. Once she chased me around the front room with a broom and almost made contact. I probably said something disrespectful.

I hate that I yell at John. Sometimes I can’t help it. I always apologize to him without the “but”. I remind myself that I am teaching him how to be treated. We make mistakes, we make amends, we forgive, we pray and we live in gratitude. Thank God for the ability to take time outs, restart our day and thank god for LOVE!

At the end of the night he has never turned away a hug or kiss, for that I am grateful. At the end of the night he knows I love him!

Grateful for the chaos

Today, I thought to myself “I don’t think I’ve had my period in a while?” So I checked my handy little memo pad on my phone and the last period was May 8th! Which means I am either due for my period July 8th and just skipped a month or I am going through menopause. I know, you’re sitting there reading this thinking “Girl, you better get a pregnancy test!” But, I refuse to believe that I am pregnant.  I’m too old for that!

In the meantime, I am losing my mind. I walk into a room and forget what I came in for. I start working on my computer and forget what I was starting to do. John is downstairs throwing remote controls around, chanting and suffering through the consequences, so dramatically. The sitter just texted to say she will be here at 12:30pm instead of 10am because she had to pick up her niece. Opps, I guess we aren’t a priority!

Last night, I sent an email to North Park University to inquire about a second Bachelor’s degree in elementary education.  I can’t sell froyo forever, right?! Can I?! I sent this email after working a 12 hour shift two days in a row because I suspended two girls at the shop, one I should have fired but seem to have a soft spot and can’t do it.

Sounds chaotic? That’s not the half of it. But, this is life. I will take this life over the crazy chaos I created on my own 7 years ago. I need to be reminded that even if life gets crazy I have the tools to get through it with grace and dignity. I can do this without screaming, crying or curling up into a ball.

Grateful for progress and not protection, grateful for the ability to restart my day at any time of the day so I can at least try to get it right and grateful for my chaos!

Now, let me go downstairs and go over the schedule with my son for the 15th time this morning, its 10:34am.  The boys excited that mommy is taking the day off tomorrow to go bowling with him. Hopefully, the employees show up for work!

The Hubs: 2017 Edition

My hubs…

Some days I refer to him as my BFF, others not so much. If you are going to have a child like John, the trifecta of disabilities (CDH, Epilepsy & Autism), you better like who you live with because you will be spending a lot of time with them.

Some days we are all we have. No one is inviting us over to BBQ’s and people surely aren’t bringing their kids over to play with my son. At the end of the day he is the only person I can vent to, tell how I feel or just sit in silence with. It’s comfortable, its safe, somedays it’s hard and somedays it’s just perfect.

We separated for two years in 2012 (I think, maybe 2011). That separation is what saved our relationship. Before we separated I was almost 2 years sober, he was an active alcoholic. He left me telling me that I was doing great things and he was holding me back. I made sure he knew that was a great excuse but it’s really because he’s too scared to grow with me.

The first year we lived under the same roof, the second year he moved out into his own condo a few blocks away. I started dating in the second year. Nothing great to talk about. It’s amazing how many men my age live in their mom’s basement apartment, hate their ex’s and just are so lost in who they are. I had literally no success, obviously. I eventually just focused on me and building a business.

During those two years Kevin always treated me well. He treated me better while we were separated then he ever did while we were together. He stopped by the house every night to see his son, he fixed what needed to be fixed, he cooked, cleaned and was an amazing example for who a father should be, except for the part about sticking around in a marriage.

John became ill in 2014 with the flu. He ended up in the Intensive Care Unit (ICU) of Children’s Memorial for one month. At that time, we didn’t know if John was going to survive. They were using words that would prepare us for incubation and what happens if he didn’t start breathing on his own. After about 3 weeks John turned the corner. He started sitting up, breathing and laughing. We were amazed and so grateful for everyone involved in saving our son. It wasn’t the first time and wouldn’t be the last.

During those 4 weeks Kevin and I were carpooling to avoid the $15.00 a day parking fee at the hospital garage. He would drive over after work texting me when he arrived and I would go down and take his truck home while he went up with John. Some days we would go home together, clean up and head back to the hospital. We would sit and chat about John’s past and how strong he is. We gave each other huge praises for keeping him alive. We talked about the good times and the hard times. During this time I was in the process of opening up my shop. Kevin was right there helping with the build out, getting permits, supplies and contracts. He was amazing.  I asked him one day on the way back to the hospital, “Why are you being so good to me? We are not together anymore, you can just move on”. He said, “This is for all of us. Just because we aren’t together doesn’t mean we aren’t a family”.

Kevin is a man of few words but sometimes he amazes me with the words he speaks.

I know he struggles with his own demons, I have seen them. But, he really has the best intentions for his family.

Today, I can’t imagine being with any other man. When I am angry at him I imagine what it would be like. I let my crazy mind travel into places, imagining myself with another man or running away by myself to a deserted island. The scenarios I create in my mind always end with me thinking Kevin would treat me kinder. Or Kevin wouldn’t judge me like that, Kevin would have made it all OK.

Every Sunday morning he brings me breakfast in bed. Every night he tucks his son in to bed. Every day he tells me he loves me. He is humble. He is kind. These are the things I need to remember when times get tough.

#GoodNightSweetWorld