Raising Daniel Hasselberger, a journey with Polymicrogyria: September 2015

Tuesday, September 22, 2015

Am I wrong to think the way I do?

I am a 49 year old Mother and wife. When I look at my kids I see some pretty amazing talent and ability. What is life really? Too short not have a grateful heart every day. Too short to spend days obsessing over negative things that will never do anything but harm your health.

Is it a fault that I like to see beautiful things, even in places where beauty is questionable to some. Is it wrong to believe that karma does exist and that finding a slip of paper on the side of a country road that says JOY in hand written blue ink is NOT an accident?

Life is a tumultous road of tedious stops and starts. Chores and maintenance, money and medical. Things that are "the right things" or things that are "the best things" or simply not knowing what to do.

I am like a little kid under a gigantic pile of papers trying to unstick myself from the mess. Sit down. Get yourself together Julie. Make a list and organize yourself. PLAN. How can you not have a plan.

The zig and zag of relying on other people to move you along the road of life is a precursor for high blood pressure. How are you supposed to work and have sanity and job security when you almost without a drop of doubt will have to leave or not even come in at least twice a week. And then there are the hospital stays...don't get me started.

The world and status quo of the financial instituations in place for individuals to live the the American dream does not apply to famlies with a child born with a severe disabilty.

Money is the one thing in my life that makes my heart beat too fast, makes me panic and worry, forces me into corners and gets me so afraid. When the bank account gets low, I am literally terrified at the thought. Because there is never enough of it. And all I really want to do when I'm stuck in those dark logistical practical places, is run barefoot along a beach or stick my hands into finger paint and just go bonkers on a piece of paper.

I don't know all of the politics on TV. I don't know what is happening with the financial markets. I don't know the intricacies of foreign affairs. But I do know that I know my son's medical needs like the freckle pattern on the back sides of my hands. It is virtually impossible to engage in the sophisticated adult world when you are doing breathing treatments and changing the diapers of an 18 year old.

Just wanting to let go and experience the love that is my son, while he is here. And yet the phone never stops ringing, and the mail is stacked with "issue" containing envelopes.

How is life supposed to be? Sometimes I feel like I'm guilty if I talk about choosing happiness and light. Sometimes I feel like people close to us want to help, but not get involved on a personal connectivity level. What I need most is love and compassion. But money is a required part of that. or not. I don't know.

I often feel an identity crisis. The way I removed myself from music. The way I isolate myself from the social life I once adored. The way I ignore the health of my own body becasue I spent tireless hours caring for my children.

As I write my eyes are closing into what feels like oncoming sleep. I don't know what tomorrow will bring.

All I know is that when I'm tired I should sleep.