So Tired of Fighting

So our preschool evaluation went exactly the way I thought it would.  I don’t even really want to get in to the details right now because I’m angry, but also because I am going to wait for the final evaluation and determination over the summer, and talk to people who can help us.  I want Harry in a general education class with a mobility aid, and I’m going to do everything in my power to make that happen.

I’m just so tired of fighting everything,  every single step of the way.  Why can’t anything be easy?  Oh you want physical therapy for your child with muscular dystrophy where physical therapy is the only treatment?  Sure, no problem.  Here, let the insurance pay for it.  Nothing seemingly normal or acceptable ever just happens.  I always have to yell and get aggressive and force things.  I feel so alone, like I’m a one man army, sometimes.  I have great support from my family, my husband is a fighter too, but sometimes you just feel like you’re fighting alone.  And this poor little boy will suffer from it, how cruel is that?

I’m just so mad right now.  Thankfully I have a lot of great support.  So many people have reached out to offer advice or contact information to someone who might be able to help.  Here is how I will build my army.  I’ve spent most of my day talking to whoever I can and preparing my battle.  Unfortunately, you get used to fighting and I was sort of on the defensive before I even met anyone.  I know anyone can read this, so I hope that if someone reads this who is directly related to this issue, please know that it is nothing personal.  Us moms of kids with disabilities feel like we have to fight because our little one’s can’t.  It’s in my genes, this indescribable push to stand in front of my little man and growl at the person facing him.  Something lights inside me and I can’t stop.  When I call doctor’s offices and meet with resistance I am immediately snippy and direct because it bubbles inside me.  Harry often looks up at me and smiles, and I feel like he knows I am protecting him.  And I will never stop.

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One thought on “So Tired of Fighting

  1. You are such a wonderful mom. My fingers are crossed and prayers are being said. Harry is a sweet little boy and with a mom like you he will be great at anything he chooses to do!

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