Gravestone: “He worked a lot”

'Thanks for all your hard work.'

 

I have never seen a grave stone that said “He worked a lot”

I’ve looked, too!  I searched google for an image using those words and other variations and found nothing. Not even as a joke, I guess it’s not funny.

I hear stories all the time about people that retire and start to lose their ability to live life due to illness or medical conditions. We hear it all that time! It’s a reminder that we need to live life as we age, not when we age.

I own a business. As soon as I found people that can work for me without me standing over them I started taking weekends off to be with my family. It took almost 2 years but it was my goal. There are weekends I might have to work here and there but the gist of it is, I take time for what is important to me.

I realize not everyone can just take weekends off. But, we can find what’s important to us, your calling in life, and do it. If working is more important to you then do it. If spending quality time with your family is, then do it. If walking your dog is, then do it! It’s about the everyday life and what you make of it. It’s not about working your ass off every day so you can retire, you may not even make it to retirement.  Show up for your life!

As we age, different things become more important to us. Each era of our lives creates a different story. For example, in my 20’s it was about relationships and getting married, in my 30’s children and family, my 40’s is family, school and work. I try hard to balance it all. But, for me throughout my life family has always been important to me.

I don’t get to see my brothers much since Dad passed away. Monday, my younger brother came by my shop with dinner. He brought Columbian Empanadas from a place he seen me check in on Facebook at. He knew I liked it and wanted to try it himself. I was beside the moon that he wanted to spend that time with me and made the time to come see me. I need to initiate those meet ups more myself.

When a friend asks me out to lunch, when my son tells me he loves me without me saying it first, when a neighbor asks us to dinner, the random text just asking how I am, a sincere display of love, feeling needed and loved…those are the things that are important to me, today.

What is the most important thing in your life right now?

via Daily Prompt: Calling

“Expectations are resentments under construction”

Today is my 18th wedding anniversary.

23 years together, 4 apartments, 5 houses, foster kids, Johnny, hardships, losses, joys and love.

After all this time together I think I figured out the secret to a lasting marriage… not giving up, at least not at the same time.

Kevin and I have dealt with a lot of issues in our years together, hard issues like alcoholism, medical hardships, taking care of ill family, ill children, financial bankruptcy, and separation and near divorce. We were foster parents for 14years. I am pretty sure the kids are the only reason we stayed together, whether we were happy or not.

Early on expectations of each other is what catapulted us into arguments. Eventually, we never argued. I know now not arguing is a very bad thing for a marriage. It means you may be ignoring the issues that are causing you resentments and anger.

Kevin and I separated for 2 years. 1 of those years we lived in the same house the other year he bought a condo a few blocks away. We raised the kids together better than ever when we were separated. Kevin was always available to help out at the house, more than ever. It gave me some time to myself which I learned scared the shit out of me. I didn’t know what to do with myself. I was always taking care of someone else.

During those two years I learned how to care for me. I was forced into it by the separation. I learned that men are not our knights in shining armor and will not save us from ourselves. I learned how to make friends with woman, all types of woman! I learned how to live sober alone, happy alone. I lived my life constantly challenging myself to try things I never did. I traveled to Ireland solo for the first time to see my dying mother. Normally, I would convince my bother to go with me. However, I did call or text my brother constantly asking for positive affirmations and guidance. I started a Non-profit for my son’s school with other moms and raised over $22K the first year. I started my own business negotiating a “divorce settlement” from Kevin because he refused to get a divorce. I took care of my dying father for 9 months with more grace then I give myself credit for. I let go a little (just a little) of Johnny, my growing boy with the trifecta of disabilities (autism, CDH and Epilepsy). Letting go is the hardest thing I have ever done, and I am still working on that.

With everything I did, I didn’t do it alone!  I had a posse of woman or community behind me cheering me on, telling me I am crazy and loads of constructive advice. They empowered me!

At some point, Kevin and I came back together. I attribute that separation to what saved our marriage. It allowed me to grow as a woman, mother and human. It allowed Kevin to watch me grow without him. He had to know I could do this without him. He also needed time to catch up in his growth and spirituality. But, that is his journey to tell.

What I love about marriage in our 18th year seem so silly, but defines who we are and how we love.

  1. Eating!

We went out to dinner for our anniversary. We talked and laughed a lot while eating with full mouths and sometimes even making a mess. As we sat there we watched a couple across from us. They sat so tall and prim. The woman had a napkin on her lap and wiped her mouth after every bite. The guy chewed with his mouth shut and covered his mouth when he laughed. I asked Kevin, “Do you remember when we were shy eating in front of each other?”  He just smiled and said “Not anymore!”  Dinner time is so much chiller and laid back. We don’t overdo the manners and we surly don’t wipe after every bite, anymore.

  1. Dating!

We are raising a family and so damn tired by the end of the night. Just after our afternoon anniversary date at the spa, dinner and a trip to Costco, we were home by 5pm, we crashed at home. At 7pm we both wondered when John will go to bed because we are exhausted. Dating is exhausting at this point. Staying home on the couch and watching a movie isn’t exhausting. My favorite is when Kevin pauses the movie to tell me something about his day. Or when I start talking and he pauses it so he can hear me. That is my kind of date!

  1. BFF

Yes, he is my BFF, my partner in life. I tell him when I am constipated or when I have my period. He tells me about the Port-a-potty issues on the job site. It’s what best friends do, talk about the things that we shouldn’t talk about. We laugh a lot!

  1. Who cares if the dishes get done?

I don’t!!  Neither does Kevin but he does them anyway. I used to harp over who does the dishes and how I hated waking up in the morning to a pile. I never even gave anyone a chance to do them. I just complained while I did them. Eventually, when I started stepping away things got done without me. Imagine that? I step away and stop doing it in my fix/manage/control way and people step up and get it done in their own time. Ahhhh…..

  1. Marriage is NOT 50/50

Sometimes marriage is 80/20. Sometimes it’s 90/10 and sometimes is 100/0. The person who said marriage is 50/50 didn’t have any hardships or loss. When John was born I had to quit my well-paying job to stay home with him. His medical needs were so overwhelming that for me working was not an option. I was his nurse. Kevin was the bread winner now. I took care of 80% of John’s care from advocating, doctors’ appointments, school, nursing care and so on. Kevin took on 100% of the financial burden. We both could have easily been resentful of the other for doing more or less. Resentments just lead to anger and isolation. Today, we work as partners. We have clearer expectations of each other and help more with the household duties. We talk about what we need help with instead of expecting it without asking. Someone told me once, “Don’t let him disappoint you”. Tell him what you want or need instead of waiting for him to fail because he didn’t know or understand.

  1. I’m not his mama

I don’t need to control him. He is a grown man and the decisions he makes in his personal dealings are his to make. I can only offer my opinion and pray he makes the right choice, most cases he does. Which leads me to the next one…

  1. Forgiveness is easier

When I am mad at Kevin I can let my thoughts spiral into a sad sad story of our lives. I script future conversations about divorce. Thankfully, I never speak a word of it! I have trained myself to fall into positive impressions of Kevin. By training myself I mean, I call a friend who loves him and tell them why I am mad. They usually side with me but always justify Kevin’s side. It allows me to take a step back from anger and look at him in a positive light. I talk about how great of a father he is, how he is always fixing things around the house, about that time he built a new garage in 2 days and put up a new fence. I talk about the way he holds John when John is sick. How he gives him a bath every night and I get to hear them laughing. He doesn’t resent us, he loves us and loves spending time with us. We know this through his actions. So that one time a month he pisses me off, is so much easier to forgive. I hope Kevin feels the same about me.

  1. We agree to disagree

I am notorious for stopping in the middle of a conversation we are debating and saying “Ok, you are right.”. And walking away.  Kevin usually laughs at me but I feel like it’s a ‘drop the mic’ moment and I have actually won. This is what I tell myself because in reality I would rather be happy then right. This little tactic has saved us from hours of the silent treatment. Best one ever!

  1. We don’t need gifts

Gifts were great in the beginning. At this stage in the game I just want him to take the lil man to Chuck E Cheese for two hours so I can catch a nap. In reality, it’s the day to day things that get done or how he shows up, that is the real gift. Most Sunday mornings he lets me sleep in but leaves a cup of coffee by my bedside just in case I want to sit up in bed. Sometimes he throws in a bagel or a bowl of fruit. My dear friend Ann always says, “It’s about the season, not the day”.  What we do for each other all month long is a sweeter gift then flowers and thigh thickening chocolates on sweetest day! I’ll take the season over the day.

  1. Our love is unconditional

Before Kevin and I separated I vividly remember telling him on a drunken night that I hate him. I remember saying it and thinking, once I say this I cannot take it back. It is my greatest regret in our marriage. However, it is also one of the things that got us to the place we are now. I remember the hurt on his face when I said it. It was all over money, paying bills and how we parent. Our love was conditional, if you pay the bills and help me parent I will love you. The recession hit us hard, we had a house in foreclosure and we owed my father a lot of money. This sort of thinking takes years to change but if you are invested in spiritual and personal growth, change can happen. After I got sober I began working the steps. This is when I realized how unrealistic my expectations were and how conditional my love was. I pushed people away by hurting them and drank to feel better about it. Today, we are partners. When we can’t pay the mortgage it’s up to both of us to make it work. If I cannot contribute financial I can contribute emotionally. I can tell him I will support him and help look for a solution. I can pray and reassure him that I still love him.

It took me years to remove the labels that we assume when we get married; romantic, knight, lover, money etc… What we thought a husband should be is not the reality. If more people went into marriage with less unrealistic Expectation of each other, the marriage would last.

My favorite words of wisdom when it comes to marriage:

“You can tell a lot about a marriage by the way they treat each other through the bad times.” – I have no idea who said this but someone did and I remembered it.

We have had enough bad times to pull us a part and back together again and again. Somehow, we keep coming back to each other.

I love my life today, I love my marriage, my home and my lil family!

“Expectations are resentments under construction” – Anne Lamott

 

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!!!

 

 

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

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!!!!

10 fingers & 10 toes

January 4, 2008 journal entry

Before my son was born all I wanted were ten fingers and ten toes
I asked God to send me the most special child he knows
I never thought about all the rest…
I wanted him to play like little boys do with his tonka toys
Batman shoes, spider webs and blues clues
I wasn’t expecting what was to come
Quickly I learned, with tears in my eyes, what I needed to know
Your child will be broken and slow
Slow to breath, slow to learn, slow to walk, slow to talk
But, not too slow to love
I learned patience and trust in God, I learned about pride and worries
He gave me the beauty of his smile and the love from his heart
I seen his fear, courage and strength through his tears
I was blessed with the miracle of a child
Before my son was born all I wanted were ten fingers and ten toes
I got what I asked for, the most special child God Knows…

April 2005 on ECMO: extracorporeal membrane oxygenation 

Johnny Born

http://emedicine.medscape.com/article/1818617-overview