The Need To Post

I so desperately want to be a blogger, to get my word out as only I can.

I want to explore the options and lives of people, like me, who are mothers, and writers, and who are raising a child with a disability.

I want to look at it from all angles and all areas of the world.

I think about blogging, I always am thinking about what I want to write, but it never seems to get from my over tired head onto my laptop for some reason.

So here goes.  Random thoughts on the hell (and highlights) that was my May.

May started with my daughter getting botox injections.  14 total in her legs, while I held her down screaming.  Fun way to spend a morning.  We had ice cream after for breakfast and then went to Toys R Us for a barbie style bribe.  Then off to first grade and then to two hours of therapy.  Really, one of us is strong and the other is me.

Next day, I went solo for my daughter’s IEP at school.  Surrounded by teachers, administrators and therapists I sat.  I listened, I advocated.  I know in my heart that all of these people have her best interest at the forfront.  But it is stressful to have the responsibility of your child’s education and daily life in your hands and have to make the right decisions and fight for the right things.  I was exhausted after, and it was noon.

The days that followed were insane and crazy and sad and interesting.

My sister opened a non=proft cafe in Evanston to train at risk youth and ex-offenders in restaurant skills, I am so proud.

My daughter had an emergency root canal.  My Mom was diagnosed with cancer.  I lost $1000 a month in state funding.  I did a webinar on immunizations.  I went to New Orleans and discovered a whole world of immunization coalitions.  We taped an 8 hour PSA on whooping cough.  I did a taping of the transplant process and acted as the patient.  I worked on the planning and execution of an event for disabled athletes, and worked hard.

In print, it doesn’t seem like much, but day after day was like climbing a mountian.

Where I dream of doing great things and being an advocate for my daughter and for other parents, I always seem to fail from just being plain tired and busy.

New day, new plan.

I am back on my game.  It is a new month and I have done and experienced some amazing things. I want to document them and live them again.


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