How to be a friend to a newly diagnosed Dravet Syndrome parent

Saturday, July 19, 2014

This isn't meant to offend my friends. I know they mean well.  But this is something I had to get off my chest and it's a lot easier to write it then say it out loud.   I've dealt with the random, awkward things people say after Selah's accident.  People would always want to know the goriest details.  In Tina Fey's book Bossypants she talks about how she can tell a lot about a person by the questions they ask her about her facial scar.  I totally get that.  I know that sometimes people just don't know what to say.  Sometimes there really is nothing you can say, except I am sorry and this really sucks for you. 

But friends please stop telling me, "God is going to do something really  big with this,"  or "This is all part of God's plan for your life and He will work it into good."  That may be very well and true but right now my faith is hanging on by a thread.  I can't see past my current trials and tribulations.  I can't see the good in this. Maybe I'll get there one day but it won't be because you have helped me realize it.  Also please stop saying, "God knew you could handle this that's why he has given you such hard situations."  I have no desire to be Job or a shining example of someone who has had really shitty things happen in their life but they still have the joy of the Lord.  I know this life isn't supposed to be trouble free, but really I just want to catch a break. 

And also, please don't stop talking to me altogether.  A few friends have stopped talking to me.  Maybe they were tired of hearing about the latest seizure, or the unfair legality of medical marijuana.  I get it. I get tired of hearing myself talk about it as well.   One thing I have learned through all this is you know who your real friends are when  times get tough.  Maybe it's for the best though.  I have zero tolerance in my life for bullshit right now and maybe talking to you would have further complicated the situation. 

And lastly, I would love to talk about other things.  I am still the same super sarcastic person who likes music, books and art.  I don't always want to be asked questions like, "Is Paloma's condition terminal"  and "Do seizures cause brain damage." Sometimes I just want to have a conversation about a dumb movie or The Daily Show.  You don't have to pretend that my life isn't falling apart right now but also don't bring it up every conversation.  I want to feel a little bit normal every now and then. 

1 comment:

  1. I am here for you! I love you dude...jr