Monday, June 10, 2013

I walk the line.

This past week has not been too pleasant.  Connor has been waking up MISERABLE. All he does is cry. I don't think it is a headache because when I ask him he shakes his head. It seems like his back hurts. I've been really careful to check his sleeping position during naps and at night. Needless to say, I'm still not sleeping very much.  By the time noon comes I have my white flag up.  But what can you do? Keep moving of course. 
My sleepless nights leave me to a lot of thinking.  I walk a line between denial and outright unrealistic paranoia. What is going to happen in the future? Will this all straighten out? Will no one ever be able to tell that anything is different? Will he just blend in and go on to lead a normal, happy life? Of course he will! He is MY child.  Nothing can go wrong when it's your baby...right?  Happy land...  Then paranoia hits.  I think to myself, "Jodi, no one can understand your kid but you, he's going to go to school? No, you need to homeschool him!"   Yea, poor kid.  But in all seriousness, how is this going to work?  Will he have to be in a seperate class from the other kids?  Will he get made fun of? Will he ever have a friend besides his brother and sister? When he is a teenager, will he be able to have a prom date? A girl that has been saying to herself for months, Gee, I hope Connor asks me...   Will he live with me until I am old and need someone to take care of me...  What the fuck is going to happen with my kid?  What else can I do to help him?  Sometimes I just don't know what to think. All I can do is keep taking him to his doctors appointments, keep taking him to his therapy and keep being patient when we get the stank eye in public when Connor has a meltdown.  This is my life.  You take it or leave it.  I take it and keep going.   I'm not going to lie though, denial days are way more fun.

 

Built in best friends, Connor's big brother Luke and baby sister Everley.





9 comments:

  1. My son was diagnosed with chiari one 3 years ago and I thank God he has been healthy this far by the grace of God he also has NF but shows very few signs but I find myself wondering what the next day or even the next hour will be my heart thoughts and prayers are with ur family

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