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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“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

 

Anxiety got me like WTF?!?!

Anxiety just creeps up on me like a bad wedgy. One minute I’m happily dropping my son off at school next minute I’m running scenarios in my head about the things that COULD happen to him after I leave.

School nurses that show up 2 hours late and seem to think nothing of it are assholes.

My son goes to school with oxygen and a nurse is usually there to keep an eye on things. She needs to make sure the tank is full, that he is breathing ok, that he takes breaks when needed and that his oxygen concentrator battery doesn’t run out.

It’s not that hard.

So when a nurse arrives 2 hours late and manages to let the battery on his oxygen run out during her shift – the main job she has – I get angry. Anger is usually my first emotion. The program teaches me that anger stems from fear or hurt.  I have to ask myself why I am angry. I am angry because the nurse isn’t doing her job! Which spirals me into the scenarios of what could happen if John doesn’t have his oxygen.

It’s a vicious cycle that I need to stop myself in the middle of and chant “Let it go, let it go”.

What I do have control over is whether that nurse comes back. I also have control over teaching the aides and teacher what to do if a nurse doesn’t do their job or doesn’t show up.

I have control of how I react to the situation.

Before I got sober I had 2 personalities; confrontational or isolation

Today, I still have multiple personalities but they come from a better place 🙂 I can pause and live in the solution, right after an anxiety attack. I can stop myself from letting the crazy committee in my mind take over and pray, right after the anxiety attack.

I don’t know if I will ever avoid that anxiety but at least I know I can get through it today with a little more grace and dignity then I did in the past.

Now I just need to pray we find a reliable nurse that cares enough to show up on time. And I will continue to be grateful for the amazing staff at his school that support us!

Social media addict?

Yesterday, I made the decision to remove myself from social media.

Yes, I did….

I deactivated my Facebook account and deleted my Snapchat.

I didn’t have an Instagram or twitter.

However, I do have accounts in all of these for my business.

On a personal level, I am not longer connected to social media.

AND I FEEL FABULOUS!!!

At first, I thought this was going to be hard. How will I survive without seeing everyone’s lives happening before me? How will I make it through a day without seeing how everyone’s first day of school was or how that girl in Bloomington is doing with the new baby. How will I make it without knowing how Ed the coffee guy managed to make it through the Park Ridge Farmers Market or how Bob from California is enjoying his new puppy?

This is how I did it. I replaced that time scrolling through social media with ME time. I looked at my son while I was talking to him. I asked him questions instead of nodding yes while responding to a post. I cleaned the oven, which was pretty cool! I did an amazing amount of marketing on milkshakes for my business and arrived into work early without being tired. While at work I read a book during the slow times and did a little extra cleaning.

It all seems so normal but for me it isn’t normal. I spent way too much time on social media. Doing all these extra things personally and professional has me feeling empowered and ready to tackle some more tasks. That’s crazy!!!!!

Last night I went to bed earlier then I usually do and actually went to sleep!  Like within 15 minutes. That’s unheard of!

This morning I woke up before the alarm and felt great.

I am pretty sure I was addicted to social media. Without it I get a little itchy, I want to just take a quick peek. I pick up my phone to click the big F (that’s F for Facebook) and for a second panic that it isn’t there. But, it’s getting easier and I am looking less.

Another reason I quit social media. It was helping me to build up resentments. I spend a lot of time with my son at home because autism doesn’t let us enjoy day trips out like most families. In addition, his chronic lung disease and oxygen requirements make it hard to just hop on out the door. Watching these assumable normal families enjoy the last few days of summer vacation was making me sad, not happy. Watching stranger’s lives that have no part of my daily life was making me resent them.

Without those visuals I can focus on the gratitude. The beautiful smile and hardy laugh my son enjoys at home. Our everyday hot dog lunches and “black popcorn” with water balloons by the dozen. The chronicles of the Boss (our puppy boxer) and homemade meals (not instagramed or facebooked) by my super BFF hubby! The best part are the text messages from the people IN my life with pictures of their kids first day at school, letting me know they are traveling for a sick family member or just asking to meet for lunch or coffee.  The important stuff!

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!!!

 

 

Strategic thinking…

Today is neuter day for Boss, the dog. Poor little guy was so confused this morning. “Why aren’t you feeding me?” He tried to eat the flowers Kevin brought me over the weekend. I had placed them in a vase on our living room corner table. A table that was actually a bedside table for the huge bed and room we had at our last house. We downsized a year ago and life has never been so free of useless crap!!

Anyway, a neuter means a trip to the vet. It’s just Johnny, Mom and Boss. I have been planning my strategy to get out of the house as smoothly as possible since last night. I changed the plan a few times. At the end I did it a completely different way. Which means all that planning, scripting and thinking was a waste of time. Well, that’s how I roll when it comes to thinking.

I put Boss outside so I could prop the front door open without him making a runner. I was just praying John didn’t let him in while I was doing it. He is a slippery one that Boss. With the door propped I can get the push chair, lunch bag and back pack out the door in one pass and into the car. Return, let boss in and get the boys out the door. I have Boss’s leash in one hand and John’s oxygen tank in the other. I use one hand to guide John into the direction of the door while Boss pulls me to the door. It’s a funny scene.

Once at the car I get John in and walk over to get Boss in. He needs to be picked up into the car since I have a high SUV and he’s still too young to jump up. He doesn’t like getting into the car. Probably because the only time he gets in the car is to go to the vet. This trip will definitely be the final straw for him.

On the way into the vet office the strategy is the same but reversed. Johnny and I agreed he was working for 10 water balloons if he behaves in the office. When we arrive to the front door I opened it too soon and caught Boss’s paw. He made a loud dog crying sound at which time John chanted the F word at least 20 times. John does this anytime a dog barks or cries. I waited till John was done chanting before we walked inside. Once inside John was screaming at the dog to get down in a “level 4” voice. Level 2 is normal talking voice, which I encouraged him to use but this seemed useless. I began taking water balloons away, “9 balloons, 8 balloons, 7 balloons…”  With each balloon he decreased his sound level. But, it went right back up as soon as Boss became excited or jumpy. The receptionist at first was a little shocked by the noise but realized john is Autistic. I was so impressed with their acceptance and understanding. The one receptionist immediately put us into a room, hoping it would help John relax a little. In the room he became more anxious and aggravated with Boss’s level of excitement.

Finally, the vet came in to give me the estimate and papers to sign. We were out of there.

At this point, John lost all water balloons so we headed home to wait for bowling at 11am.

On the way out the door of the Vet John said, “Scared”

I asked him “Why were you scared?”

“Dr. Lestrud”

Dr. Lestrud is John’s Pulmonary Doctor. I believe John thought he was going to the doctor for himself.

When we got into the car I sat there for a few minutes trying not to cry. I wanted to cry because the people in the office were so nice. I wanted to cry because John thought he was going to the doctor. I wanted to cry because John didn’t feel safe and I didn’t prepare him for the Vet visit. I wanted to cry because this was just so overwhelming.

I cried because this was what I seen….

John at Vet

You wouldn’t event know how hard the last 15 minutes were by looking at him. He is in the car, safe and content. He knows he is going home where he is safe and happy.

How does a parent prepare their child for the hard world when they can’t get them out into it?

To teach…or not to teach?

Recently, I have been thinking about going back to school for a degree in Early Education. Since I already have a Bachelors it wouldn’t take too long. I have always wanted to be a teacher. The hours and seasons would work perfect with my seasonal business selling froyo and with John.

Anytime I start thinking about changing careers, making life decisions or anything of that caliber I throw it out into the world. I start talking about it. I truly believe if you put it out there the answers will come. When I mention going back to school to be a teacher most people say, “You could be a Special Ed teacher!!”, like it’s the most exciting thing since sliced pie.

Um, NO!

It’s like a mechanic with a crappy car. He goes to work all day and doesn’t want to come home and take care of his car, too. Just because I have a special ed. child doesn’t mean I would make a great special ed. teacher.

I appreciate all the people that have taken on John and didn’t give up. He went through 5 schools before 6th grade. He had some amazing special ed. teachers and one crappy special ed. teacher (She’s a whole other blog post). But, I don’t think I could do it. I get a real high off of watching kids do “normal” or “typical” things like color, eat, talk, play and breathe. It makes me so happy when kids play using their imagination or when they interact with other children. I would love to be the person to facilitate all this normal behavior. I would also love to be the person to mold these “typical” children into kind, smart productive high schoolers.

So this is me putting it out there, again. I am still on the fence. My brain tells me I am crazy for taking on all this extra work, my heart tells me I could make a difference. I let myself think too much about it and the committee in my head can be a tough committee, not always supportive. I find the most real support, whether it’s for or against, from the real woman in my life. They are the most honest! Sometimes they see things in me that I don’t see, good and bad. When they are brought to the forefront I can recognize the good and work on the bad.

Love my amazing tribe of supportive woman!