Compassion is free


I am still here.  I’m a survivor.  I beat stage 4 neuroblastoma in May of 1984, but have to live with the fallout from treatment and viral encephalitis for the rest of my life.  But I am still here.  Maybe it is a good thing I don’t remember anything.  But advocating for something I experienced and don’t remember a second of makes me wish I had something to say to these families who are going through it other than, “I’m so sorry.  I’m praying for you and your little one.”

I wish I had money.  Lots of it.  So many of these families are hurting for it.  We all know money isn’t everything in life, but it certainly doesn’t hurt.  It makes a huge difference for parents who can’t work when their child is going through treatment, and many parents, if not all, suffer post traumatic stress disorder.  Their child’s body may be the one that carries the physical scars, but it’s the parents’ hearts and souls that carries the emotional scars, even if the child survives.

I hate the fact that people are quick to offer prayers and love, but when more is needed, things quickly turn nasty.  Parents are reduced to begging for help, their dignity torn to shreds.  Whatever happened to loving your neighbor as yourself?

My friend Shannan tells me that sometimes there is no choice.  Parents leave their children alone in the hospital while they work at jobs just to make ends meet. The child is scared, sick, and alone, crying with no one but strangers to comfort them. This is heartbreaking.

I ask you, how is that better?


3 thoughts on “Compassion is free

  1. You are here for a reason, you are here to share and change. Your experience and life are worth so much… I live to change things- create awareness, create experiences and make people understand the needs now and later… all because Madeline isn’t here to. She would want to change this if she were… she was like you. Keep writing, sharing, pushing, connecting and changing. You were born for this.


  2. I love you, my friend. You are so strong and brave.
    Yes, this is the sad truth.. we both know that too well.
    We are still here to raise awareness and that’s what we will keep on doing until a cure is found.

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