Lets Be Real With Each Other, Right Now…

What I can say to you but not to my 15 year old son.

Driving him to school today we passed some kids at a playground. He looks over and says “How cool would it be to be little again”. I agreed. To go back to a moment, a day, or a time in your past that is your favorite. He said. I would choose 5 years old but with all of the knowledge I have now”.

As I am dropping him off I give him a hug, say I love you. What is really running through my head was 5 years old would be the last age I would pick. I know everybody has a past, everybody has a story but for me in my life at age 5 was when life ended.

Im not saying that I haven’t had some horrific shit happen after but I think when your older you can cope. When your little you don’t understand whats happening around you. Before 5 I had what seemed a “normal” family, a “normal” life.

Christmas was coming around, my Papa (my mom’s Dad) Passed away suddenly of a heart attack. He was one of the most important people to me in the world. Within weeks my Dad left. I was not aware at that time he had been cheating on my mom and he made the choice to leave our family. Who knows, the stress from my father cheating on my mother could have resulted in killing my papa?? His baby girl being hurt like that…

My mom had graduated high school from a small town, joined the military during Vietnam war were she met my dad. They married and had five beautiful children. She became a house wife. When he left she found herself alone, never worked a day in her life… She had 2-3 jobs at a time to keep us in our house, fed clothed and off welfare. My dad did very little to support us.

My oldest sister moved out, got married. My oldest brother moved to Arizona for school. My best friend across the street and his mom who was like a second mother to me moved away. So here I am going from life as I know it to No Dad, No Mom, No Brother, No Sister, No Friend, No Papa, No One to count on, to depend on…

My Brother Jon and Peder were only a couple years older than me. Jon had to grow up fast, he became the man of the family. Even though he wasn’t old enough. Not by maturity, by age or by the laws standards but if he hadn’t stood up and helped raise my brother and I don’t know if we would have all made it? My mom did her best but he was the glue that held us all together. He made sure we got on the bus, got off the bus safe, had breakfast, he even learned how to cook dinner. Cleaned the house and would even get us to kick in. Mom had to get sleep in between every job. She was either at work or sleeping.

My mom went from a stay at home mom baking cookies, going to all the school functions, cooking all of the meals, being there for everything to being absent. She had to work! I remember I would fake being sick sometimes just so that she would have to leave her job and pick me up and take me to work with her for the whole day! It would frustrate her but then I knew that her and I would get to have alone time. It was the only alone time I remember having at that age. She had a job at a chemical factory where she had a desk in the middle of a huge warehouse. It was so cold, she would sit me next to her and this little space heater. I remember getting orange juice from a food truck. That was one of my happiest times with my mom, I was with her.

I failed that year at school. Even when I was there I was checked out. I learned nothing, I cared about nothing. It is so hard to care about school when your life changes so much.

My memories of my Dad at that age were that if we wanted to see him we had to call him to set something up. How is that fair to put that on your children? I was five years old, I didn’t know what was going on. My mom Bless her, never said one bad thing about my father. That was one way she protected all of us was by not speaking about what happened between them. Their business was their business. I did hear her cry some nights. I cried myself to sleep so many nights feeling so alone. Feeling as if everyone had left me and not understanding what I had done wrong to make everyone leave.

I would Pray to my Papa every night for years to come home. That he could fix everything. That everything was ok when he was alive… My Mommy and Daddy were together my family was whole.

If I could pick any age it would not be 5 unless it was to warn myself that life was going to be rough for awhile but good things come out in the end.

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When Life Was Simple…

So thats a joke… Life has never been simple. Life has never been easy. If it was I guess it wouldn’t be worth living, right? Some days I wish were easier, some days it would be nice to have nothing going on but I do not get to choose what happens in my day. So much has happened in my life that I have to hold inside. Someday I will burst… I may not be able to control my past, present or future but what I can do is control how I deal with it! How I look at life and the situations I am in can be dealt with in either a positive manner or I can just be grumpy about everything. Its easier said then done sometimes but I would rather talk about it, get my feelings out and try to be positive rather than holding it all in and just be negative all the time. All I see when I look around me is anger, frustration, and sadness. How did we get to this point? How do we get back to where we were? Faith, Hope, and Love…

Living In The Moment

Rather than looking into the past I am trying to focus on the this moment. At least that’s what I am learning to do. With this constant pain I endure and the reality that this is it. It’s so hard not to look at old pictures of my children and memories of when they were younger. Thinking do they even remember me before I was diagnosed? Do they remember the mom I was before I was in pain all the time? Living in this moment is hard.

Sometimes I want to skip a bit into the future… What will I be then? A better wife, better mom, better me? Or still just in pain just a few less years of my life.

Maybe one of the lessons of “living in the moment” is not dwelling on the past or worrying about the future. I can’t change anything. I can’t make what I have magically go away. It’s here.. Deal with it!

A New Day

Awoken with a new clear sense of duty and purpose today. I charge ahead not looking back at the past but at the immense beauty of my future. Knowing not all days will feel like today I must take full advantage of this clarity. When life is usually spent gravely ill, in a fog with little to no light to my days. Today, Of all days I feel sun on my cheeks. The warmth on my skin, tingling down to my bones. I will hold onto this moment as long as I can. I will hold onto this day as long as I can. For the future will come and along with it the unknown.

Silent for so long

I’ve kept to myself for so long that now my thought are all in a ball. Rolling around in my miserable head. Ready to be free! I have so many great stories.. Where to begin is the question? Regardless if anyone ever reads my blogs I want this to be fun, tell my life story, explain my experience with living with Adult Onset Arnold Chiari. Hopefully I end up helping someone and at the same time helping myself. God knows I need it!

I will not be silent any longer.

Living in the moment

Rather than looking into the past I am trying to focus on the this moment. At least that’s what I am learning to do. With this constant pain I endure and the reality that this is it. It’s so hard not to look at old pictures of my children and memories of when they were younger. Thinking do they even remember me before I was diagnosed? Do they remember the mom I was before I was in pain all the time? Living in this moment is hard.

Sometimes I want to skip a bit into the future… What will I be then? A better wife, better mom, better me? Or still just in pain just a few less years of my life.

Maybe one of the lessons of “living in the  moment” is not dwelling on the past or worrying about the future. I can’t change anything. I can’t make what I have magically go away. It’s here.. Deal with it!