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The World Sucks

January 11, 2012

Today has been an emotional day for me. For whatever reason.  Hormones or whatever.

 

My friend Heidi’s daughter, Riley, has had a hard week.  Her chemo treatment wasn’t able to be performed as it should have been.  Her little body was just not up for it.  Then they tried to get her into some clinical trials.  Four different hospitals from two states and two COUNTRIES away.  Three denied her yesterday.  The final one denied her this morning.   The world sucks.   When its a child that you’ve seen fight and smile through the pain and beat the odds.. you can give a crap less about criteria.  When you talk to a mother who just wants her to be happy and healthy and go to Disney world.. you can give a crap less about EVERYONE having the damn treatment.  Why is she worth less?  When will her break come?  I just want to scream at these people to look at her pictures and videos and listen to all of us who have been cheering her on.  So she doesn’t fit into the box of the standard criteria.   Who cares.  She has been spending her life astounding doctors and beating the odds.

 

So I started the day off pretty pissed and weepy.   Crying for all the Riley’s out there and all the Heidi’s who have to watch their child with little they can do.  Because they don’t meet criteria.  Makes you want to shake someone awake.

 

Then I took Rett to speech.  And there was a new mom there that I haven’t met before.   Rett went back and she was there with her kiddo.  He was a cute little black boy carrying a plastic straw and making noises.  She asked me how long we had been going there.  I told her.  She asked me if it had helped.  I told her it took awhile but yes, it had helped.  She asked me if Rett was autistic.  And I said yes.  I’m one of you.  I’m an autism mom.   She asked me if he was non verbal.   And I really wanted to say yes.  That my son is just like yours.  And this will help him.  But I couldn’t. And when I told her that no he talked, I could see her spirits sink.

 

Its hard to sit in the waiting room and not be relieved that your child isn’t ‘as bad off’ as some of the other kids.  He can talk. He can play.  He is loving.  I didn’t do anything to make that happen.  They didn’t do anything to make their kids non verbal. Or make them love straws.  Or make them say rude things to the other children so that nobody wants to play with them.  Nobody DID anything.  Including these kids.  And as overwhelming as my situation seems, I’m sure there are a lot of parents that would love to switch me places.

 

When new mom came out of her speech session I asked if she had therapy next week at this time.  She said she didn’t know yet.  I told her that I might would see her next week then.  I remember coming to the Sunshine Center and feeling relieved to be welcomed by these moms.  Into this new club that was so scary and overwhelming.  And now I’m part of the welcoming committee.   I said a prayer for her and her little boy when she left.  Because what else can I do.  The world sucks.

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2 Comments leave one →
  1. January 11, 2012 8:21 pm

    I love your posts, every one of them. This one really hit home because you hit it dead on. I have nothing to add-you said it perfectly.

  2. Nichole Sabo permalink
    January 11, 2012 8:52 pm

    I know what you are feeling. I find myself another upset that Miss Riley can’t get the treatment and needs. I hope and pray that she and Heidi get a break soon. I also know what you mean. Its hard when other parents ask you about your child and you can see that they’re hoping your child is like theirs because if your child is doing well then there is hope for their child too. I’ve been frustrated to the point of crying since receiving a denial letter for services for my son. Basically because he isn’t as bad off as some kids he doesn’t meet their criteria. It’s been an ongoing thing for us and I hate that he isn’t being given the same chance as other kids with autism. I wish there was someone here to be a welcoming committee of sorts.

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