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!!!

 

 

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

 

Keep me posted

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.

Go home and “keep me posted”

ilovebowling
I just wanna bowl!!!!

“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!

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

7 years later…

A friend introduced me to Anne Lamott.

She gives a Ted talk about the 12 truths she learned from life and writing.  The two that immediately popped out at me are “stop helping so much” & “Just do it!”.

The other 10 are also spot on. But, in this moment in my life these two popped out to me personally.

Stop helping so much: I spent the last twenty years helping others even when I didn’t want to. I started to resent people because I was helping them. Today, that idea seems backwards to me. Today, when someone asks me for something I have learned to pause and think about it before saying yes. Sometimes I say “Let me check my schedule and get back to you”. I like to be able to say yes with the feeling of really wanting to help. If I say no, its because I really can not help. Something about the situation either doesn’t feel right with me or will be taking me away from something that is important to me. One of the ways I have combated the guilt I feel for not helping is advising on where else they can go for help. Sometimes people have to do a little more work, to help themselves.

Just do it: I used to start things and never finish. Or I would never start and talk about it for months or years. When I decided to change my life 7 years ago I never imagined I would become a “Get it” kind of girl! Today, one of my weaknesses may be my strength. I don’t think before I do. I get an idea and run with it! I try it, sometimes I fail and sometime I succeed. I do not let fear lead me, I let it trail behind me on my coat feathers trying to catch up. It’s always there. I am pretty sure if I thought too much about it, I wouldn’t do it. I would let the evil little committee in my head tell me I am crazy, slow me down or halt me all together. But, NO, today I just do it! Now, I own a business I love, I balance life with family (sometimes), and I am still married (happily, most days). Imagine that!

My 7 year anniversary is tomorrow. Happy 7 year to me! The day I decided to Just do it, for me!

Anne Lamott gives a Ted talk here. Love her balance of humor on serious topics. Must listen!!

 

What is this all for?

During John’s last hospital stent I wrote this. I am so glad I journal to remind myself of what we have been through. We can do it all!!

3/8/2017

While John’s in the hospital I often start thinking about what the purpose of this life is?  We all hope that there is something beyond this, otherwise that makes this life for nothing. What is the purpose of all the hardship and joy, lessons and hurt?  I was driving back to the hospital the other day after going home to take a shower.  I was in a rush and angry.  I often talk about how horrible my road rage is and it’s so unnecessary.  I saw an elderly woman looking so sad standing close to edge of the street ready to cross, a family leaving the hair salon struggling to push the stroller through the door, a car speeding past me to make the light and a man in a wheelchair just waiting. Then, I thought about my mom and dad while they were dying.  All the pain they went through, what was it for? After they died so many people gathered to celebrate their lives and show their respects.  So many people had stories about all the days they gathered together.  Three years later no one is telling those stories anymore of my mom and her feisty ways.  The Irish woman divorced who moved back to her home country to retire with her American ways.  Drinking beer from a bottle and going to bars alone.  They really had to get used to her and grew to adore her.  One year later no one is talking about my dad’s generous heart.  The way he would stop and talk to a homeless man and had no problem giving him twenty dollars every time he seen him.  How he would buy a stranger in the bar a beer just to see them happy. What is the purpose of all this?  Why are we going through this life only to die and be forgotten?  In 100 years, no one will know my name or John’s name unless they come across it on a tombstone.  No one will know the lessons he learned.

Today, everyone talks about how beautiful he is.  How he makes sad people happy. How his smile brightens a room. How he curses like a sailor and how brave he is.  In 50 or 100 years when I am gone and john is gone no one will remember any of it.  All the pain my little man endured his whole life will be for what?

History shows people repeat the mistakes of the past.  Presidential candidates try what’s been done already and fail.  People suffering from mental illness and cancer are still not cured.  What is this all for? If you talk to a Jehovah witness, they will tell you the reward is in heaven.  A Catholic will tell you its eternal life.  I don’t know.  It’s all intertwined with hope and faith in a higher power. Letting go of what we cannot control and allowing life to happen gracefully.  Acceptance of people for who they are.  And responding to hate with love.

I always conclude with, “I have no idea but if we need to be here we midas well be kind”.  Even while driving.  I am grateful that John is with us.  I am for every moment. We take the pain because there is so much good that comes along with it.  I hate the pain because of what it does to his little body and life. But I love Johnny more than life. Countering the hate with love…we will be better than ever.