The Hubs: 2017 Edition

My hubs…

Some days I refer to him as my BFF, others not so much. If you are going to have a child like John, the trifecta of disabilities (CDH, Epilepsy & Autism), you better like who you live with because you will be spending a lot of time with them.

Some days we are all we have. No one is inviting us over to BBQ’s and people surely aren’t bringing their kids over to play with my son. At the end of the day he is the only person I can vent to, tell how I feel or just sit in silence with. It’s comfortable, its safe, somedays it’s hard and somedays it’s just perfect.

We separated for two years in 2012 (I think, maybe 2011). That separation is what saved our relationship. Before we separated I was almost 2 years sober, he was an active alcoholic. He left me telling me that I was doing great things and he was holding me back. I made sure he knew that was a great excuse but it’s really because he’s too scared to grow with me.

The first year we lived under the same roof, the second year he moved out into his own condo a few blocks away. I started dating in the second year. Nothing great to talk about. It’s amazing how many men my age live in their mom’s basement apartment, hate their ex’s and just are so lost in who they are. I had literally no success, obviously. I eventually just focused on me and building a business.

During those two years Kevin always treated me well. He treated me better while we were separated then he ever did while we were together. He stopped by the house every night to see his son, he fixed what needed to be fixed, he cooked, cleaned and was an amazing example for who a father should be, except for the part about sticking around in a marriage.

John became ill in 2014 with the flu. He ended up in the Intensive Care Unit (ICU) of Children’s Memorial for one month. At that time, we didn’t know if John was going to survive. They were using words that would prepare us for incubation and what happens if he didn’t start breathing on his own. After about 3 weeks John turned the corner. He started sitting up, breathing and laughing. We were amazed and so grateful for everyone involved in saving our son. It wasn’t the first time and wouldn’t be the last.

During those 4 weeks Kevin and I were carpooling to avoid the $15.00 a day parking fee at the hospital garage. He would drive over after work texting me when he arrived and I would go down and take his truck home while he went up with John. Some days we would go home together, clean up and head back to the hospital. We would sit and chat about John’s past and how strong he is. We gave each other huge praises for keeping him alive. We talked about the good times and the hard times. During this time I was in the process of opening up my shop. Kevin was right there helping with the build out, getting permits, supplies and contracts. He was amazing.  I asked him one day on the way back to the hospital, “Why are you being so good to me? We are not together anymore, you can just move on”. He said, “This is for all of us. Just because we aren’t together doesn’t mean we aren’t a family”.

Kevin is a man of few words but sometimes he amazes me with the words he speaks.

I know he struggles with his own demons, I have seen them. But, he really has the best intentions for his family.

Today, I can’t imagine being with any other man. When I am angry at him I imagine what it would be like. I let my crazy mind travel into places, imagining myself with another man or running away by myself to a deserted island. The scenarios I create in my mind always end with me thinking Kevin would treat me kinder. Or Kevin wouldn’t judge me like that, Kevin would have made it all OK.

Every Sunday morning he brings me breakfast in bed. Every night he tucks his son in to bed. Every day he tells me he loves me. He is humble. He is kind. These are the things I need to remember when times get tough.

#GoodNightSweetWorld

7 years later…

A friend introduced me to Anne Lamott.

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

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

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

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

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

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

 

What is this all for?

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

3/8/2017

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

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

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

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

Happy Mother’s Day

Every morning he says “whatda we have?”  This morning my response was “dance class”.  He replies “Chuckie cheese?’  I say, “No, Johnny you didn’t earn it.”.  Then he places his forehead against mine and kisses my nose gently.

This is the typical morning with John first thing.  He usually turns into a clown by tickling me, burping or farting.  But, he always says “exxxxxcuse me”.  He’s polite like that.

This morning for some reason he also asked for Grandpa and signed it.  I feel like his presence is here to say Happy Mother’s Day as well.

I am the luckiest mom in the world to have been chosen by John. He’s a clown, loving, feisty, polite, and more…and somehow I feel like I had nothing to do with all that.  I love this kid to bits!

Happy Mother’s Day!!!

Death of a Chameleon…

Death of a Chameleon 

I miss the beginning…

Closing my eyes and running forward not scared of what is ahead of me.

Being held up by my “friends”

Carefree

Loving myself

Being able to look in anyone’s eyes and feeling something

The excitement

The smell

Barcardi

A chameleon

Until one day the end came….

Open my eyes, now I’m scared

Losing all my friends

Heavy hearted

Hating myself

Scared to look, feeling ashamed and scared

The fear

The smell

Barcardi

Death of a chameleon

Is a new beginning

That wasn’t me; One of my favorite songs that really describes what it’s like to change from this chameleon to the real person I am today. That wasn’t me who made all those promises and created all that drama. This is me, today! That I can live with!