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

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“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

Every visit has a memory

Every visit has a memory

Worst night this time around…

Every time John has a hospital stay there is something horrible that happens that we will never forget.  The first 13-month stent has a bunch of bad memories.  Like the time they placed an IV in his head because they couldn’t find his veins, they were so narrow.  Or the time they called us into the hospital at 2am saying this might be it, we need to get in fast.  I remember the rooms we were in and the people standing there.  Their faces are a blur but I know how many people were standing around and what they were doing.  This time around I will never forget tonight 3/13/17.  John destated to the 40’s on his oxygen.  I haven’t seen him that blue since he was a baby.  The whole experience is making me question every decision I have made this trip to the ICU.  Nothing like a trip to the ICU to fester up that mother’s guilt.  What should I have done differently? Maybe I should have come sooner? You know, like any mother except my decisions are based on life and death.  Oh, the fucking pressure!!! No wonder I drank!

I think what keeps me from breaking down is the fact that Kevin is breaking down.  He can’t stand this and emotionally collapses.  I end up having to hold him up, talk him down and tell him everything will be all right.  Tonight, after he went home I wanted to cry. But, I didn’t because I had to take care of John, get him to sleep and make sure he got his meds.  Then, when he fell asleep I sent Kevin a text letting him know.  Kevin called me.  How grateful I am he calls me today.  He was crying saying this isn’t fair and how hard it is to see John like this.  I sit and listen, tell him I understand and recommend he takes a hot shower and sleep well tonight. But, don’t forget to say your prayers.  He agrees, calms down and we hang up.

It’s my insatiable need to be in control that prevents me from breaking down.  I need to be the one barking out orders and telling people what John likes and doesn’t like, making recommendations on what to do next, talking to the doctors. It’s my character defects working to my advantage. I’ve yet to see a parent sobbing while making medical plans with a doctor in the ICU. It just doesn’t work that way.  You hold your shit together and do what you need to do.

And you remember every single detail and pray that the next time it will work out the same way.  And when it doesn’t you panic inside but manage to brainstorm more ways to move forward. And each step you take forward there is a heart wrenching twist in your gut praying it works. When it does there is a victory dance in your stomach that is hard to explain. When it doesn’t it is like a loss, like you are one step closer to losing him.

People that cry

My son John has been in the hospital.  He has the flu which means he needs ventilator support and drugs that open his airway and more drugs to counter the side effects of those drugs.  It’s a vicious cycle with the drugs, scares me to think the damage it’s doing to his body.  But, extremely grateful for the good it does.  Wednesday and Thursday night I never left the hospital.  I closed the store Thursday night because no one could cover my shift.  The kids that work for me seem too busy to work at times between college, family and social obligations.  Friday morning, I had to go into the shop to clean a machine.  I figured while I was out I would catch lunch with Nora and her daughter Zoe. 

Zoe is a feisty, bossy little lady that is descend for great things.  She’s a princess on some days with her Frozen princess Ella dress and a regular little girl on other days with her Pajama wearing style. She loves to make people smile but she has to be fed first.  She’s a girl after my own heart.  Nora and I arrived at Fannies, our favorite BLT hot spot, at the same time.  She was walking from her car with little Zoe trotting beside her chatting while I crossed the street to meet them at the front door.  Something about Zoe’s spark made me emotional.  I started thinking about Johnny and how he loves to make people smile.  My heart was broken watching him struggle in the hospital.  The last three days he hasn’t smiled at all.  When Zoe seen me she walked right up to me and hugged my legs.  The top of her head reaches just above my knees.  Her skinny little arms grabbed hold of my knees and gave a big squeeze.  Then she looked up at me and handed me two stickers.  Nora explained that she wanted to share her stickers to make me happy while I am so sad. The water works came on so much so that I couldn’t bring myself to sit down and eat lunch. 

This scene lasted less than a minute but has forever been engraved in my mind.  It reminded me of my own childhood and how we dealt with tears and sadness.  As a child, if I saw someone cry I was like a deer in headlights.  I didn’t know what to do.  The thought of providing a sad person with a hug or pat on the back was completely awkward to me.  It still is sometimes today. 

My father never cried, other than when his mother died and my son was born. I believe the fact that he didn’t cry was a life accomplishment for him.  While my dad was dying from cancer I set up his bedroom in our living room, Sunshine Rehab he called it.  I was forced to enroll John back in school instead of homeschooling because I knew I couldn’t handle the pressures of caring for Dad and John at the same time.  The first day of John’s school I came home crying because I felt they didn’t want him there, I was almost 5years sober at this time so crying wasn’t a weakness anymore, it was my strength.  My dad just stared at me like a deer in headlights.  A few days later he confessed to me that when he seen me like that, crying and all, “I almost cried”.  Imagine that.  He said it like it was an accomplishment that he didn’t cry.  As if crying would have been a bad thing. 

The last time my dad cried was with me.  He told me he was sorry I had to go through this.  I asked, “This?  Go through what?”.  He said, “Having to watch me die. You had to watch your mother die and now you are watching me die and I’m sorry for that”.  I said, “Thank you for allowing me to be here to take care of you, I love you”. Then we cried with our foreheads touching each other. 

Dad said, “Im gonna miss you”

I said, “You’ll be gone, Im gonna miss you more”

And I do ❤