One F***ing Pin!

Has it been 2 months?

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

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

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

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

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

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

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

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

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

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

via Daily Prompt: Conjure

 

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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

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

 

 

 

#ISeeYourLight

This afternoon the hubs and I went to Emma’s place at Victory Gardens Biograph in Chicago. An ABLE Ensemble production of Gems Unseen. A.B.L.E stands for Artist Breaking Limits and Expectations. The ABLE group stands alongside the students with disabilities and recites the lines to them so they can in turn recite the line. There is no pressure for the kids to remember their lines and they get to participate in a live onstage productions for their families, friends and community.

Unseen Gems is a production of 4 stories “about 4 very different people and the talents and strengths that lie beneath the surface. Over the course of 10 weeks, the cast of 21 actors with developmental differences, supported by a team of teaching artists and volunteers, devised their own tales for performance. Working in a variety of mediums including, scenes, monologues, movement and music, the group will share their true colors and diverse talents.”

Watching Emma and the actors perform was absolutely amazing. They told stories about people being beautiful on the inside and what that looks like, the outside doesn’t mean anything if the inside is ugly.

For the event I had our babysitter from 11am till 6pm. We all went out to dinner afterwards and talked about the show. I can’t explain how proud I was of Emma, Johnny’s BFF. I was honored to be at that table with Emma’s family and friends.

As I walked into my house at 6pm my son turned around from the table and shouted “asshole!” I guess my presence startled him at that moment. His sitter reported that he was great all day with the exception of one incident with the dog, but everyone is fine.  I talked about the show a little while Johnny started chanting over me and calling my name. I missed him all day but at that moment I could feel my sadness coming in.

After the sitter left I tried to explain to John where we were. Even at John’s
Age of 12 years old, he would never sit still or stop making loud noises at a venue like the Biograph, which is why we couldn’t bring him.

I said, “Someday Johnny I would love if you could come to one of Emma’s shows with us?” John looked at me and said “I can’t wait!” He must have heard that from somewhere as an appropriate response and used it on me. I actually had butterflies thinking that he may want to do something like that someday. Then, he looked at me and said “Chuck E Cheese?” and I said, “Yes, Johnny you are still going to Chuck E Cheese tomorrow, you earned it”.

He needed to make sure I wasn’t upset with him and he still earned it.

I am grateful John can be pleased with so little. He loves Disney, Chuck E Cheese, black popcorn, Wheel of Fortune and taking baths. I could walk through Target for hours without him asking me to buy him a thing. I could drive across the country and he wouldn’t ask for a thing other than the items I just listed.

It’s what he needs to function I cannot give him. The sensory processing, the moments in his head that he can’t control, the anxiety and fear when he meets someone new or goes to a new place. The ability to control his cursing, outburst and frustration. I can’t always give him a quiet place. We have to go out into the world, it’s a requirement to living.

All the things that are important to me mean nothing to him. For example, being able to go to the movies as a family or checking out the latest kid’s venue. Time spent together as a family. I understand that most kids don’t want to hang out with their family but when they grow up they are grateful for those moments and talk about them around the holiday dinners. They reminisce how mom and dad made them do this and that and how they hated it but are so happy they did now. What will we have to talk about in 20 years? How John stayed home while we went to the plays and movies because John just couldn’t handle it? Furthermore, his uncles and aunts aren’t breaking the door down to spend some quality time with him like they do with the rest of the kids. We are all we have to make memories.

Writing this just makes me even more grateful for Special Olympics! Being a part of something big!

His anxiety, cursing and isolation seem to be the norm these days. His obsession with his schedule is getting worse. I am so grateful for his school where he loves to hang out with his 12 other classmates. However, I am already thinking about his transition to high school and how hard that is going to be for him. I feel like I am always ON, never turning off the worry and anxiety of his future.

Regardless of John’s struggles #ISeeYourLight

I see the beauty inside. The boy that makes people laugh. When he arrives at school and has two of the crankiest people on earth glowing when they see him coming. He changes peoples. He makes people stop and look up and be grateful. So that is what I will talk about at the table in 20 years’ time. How my extraordinary little man changed so many lives just by being present in his own unique way. #ISeeYourLight I love you Everyday!

John 22John 2017

“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

 

Medical PTSD…Gratitude?

On the evenings I am not working Kevin and I put our son John to bed together. It is always filled with laughing, hugs and kisses. John takes a dose of melatonin every night right before bed that allows him to relax enough to fall asleep on his own. He is a happy boy, especially when he is home.

Daddy takes him into the bathroom for P and teeth cleaning while I go into the bedroom and set up the night light and sheets. Some nights I chase him into the bed pinching his little butt while he laughs and swats my hands away. He throws himself into the bed laughing hysterically, so much so his lips turn blue.

“Johnny stop laughing so hard, your lips are blue, breathe!” as Kevin and I look at each other nodding our heads with the look of “Wow, can you believe this kid”.

Kevin and I lay in the bed with John between us. We laugh at the silliness of John and usually mention how handsome or grown up he looks. Tonight, we mentioned how straight his teeth are and how beautiful his smile is. He has Kevin’s teeth, I had braces.

We say the Our Father Prayer with Kevin’s hand across us both. Tonight, Kevin was rubbing my back. John took Kevin’s hand and moved it away and began rubbing my back himself. We all laughed and kissed good night.

Sobriety brought me here….I am forever grateful for these moments that I do not rush and adore so much.

However, sometimes my mind goes to a dark place. For literally a second, my mind imagines the space between Kevin and I in that bed empty, without John. It gives me a knot in my stomach with a weakness I cannot explain. I shake it off quickly.

Death is something I think of a lot. I don’t do it on purpose. My mind just goes there. Sometimes I wonder if it’s my brain preparing me for the “what ifs”. But, my smarter brain tells me not to think of the ‘what ifs’ and to live in the present. I am not sure how to make these thoughts stop. I feel like it’s a symptom of medical PTSD, from all the years of watching him almost die or struggle to breathe.

I just don’t know how to make it stop…

Daily Prompt: Sympathy (Keep it!)

Sympathy

Sympathy: caring and understanding for the suffering of other

Don’t tell me you have sympathy for me as a mother who has saved her child’s life a hand full of times. Don’t tell me you have sympathy for me when you hear I gave him CPR today or we made it through another seizure.

Don’t tell me how you could never do what I do.

You cannot imagine my feelings or what is going through my head while I gave him CPR – How I cried and prayed he wouldn’t die in my hands. How I screamed for the paramedics to hurry up. You cannot imagine how I felt.

I hope you never know how it felt.

Keep your sympathy, give me your heart. Give me your silence so I know you are listening. Give me your time so I know you care. Give me your prayers so I know you love me. Give me your patience when I don’t return your calls. Give me your love when I am angry.

But please don’t give me your sympathy.