How are you?

seriously the worst question ever.  When someone asks me, I freeze.  I  am  okay  I mean i'm breathing, I remember to brush my hair, and no headache or colds or anything.  I'm not okay either, I am completely indescribably devastated.

We went to the MDA clinic yesterday.  I don't know why I am having a hard time explaining it.  I feel like a lot of people wanted it to be all better for us after we went there but that is diffidently not the feeling I have now.  I do feel a lot more supported and it was nice to have everyone be genuinely nice and understanding. I am not going to lie though it was hard to be there, really hard.

While we waited Robbie was playing xbox.  I looked up and a boy maybe 12 wheeled up to the game next to Robbie's and started playing.  I am pretty sure he had DMD but I cant say for sure.  I am warning you i am about to sound like a bad person here.  I was panicking, he had the same hair color as Robbie's and Robbie he kept looking at the chair.  I was trying so hard not look.  I was fighting my urge to cry so hard I have a sore on the inside of my lip.  I don't want my baby in that chair, I didn't want that boy in a chair.  I wanted to run away. Just grab Robbie and run. I have been very good at avoiding the realities of this disease. I have kept myself in the present forced myself to be hopeful. Suddenly  reality and the future were slapping me in the face.  I want to say I handled it well but that would be a lie. Then Robbie farted...

The boy looked up i said excuse you to Robbie and they giggled.  Two boys giggling, playing xbox. 2 beautiful sweet amazing boys laughing.  Life is being so cruel and unfair to them and they are giggling about farts.  It was a good lesson to me that while this is going a hard road for Robbie he will still be Robbie. I  will be able to handle this because well, I really have little choice.

Anyway today we went back to the neurologist where we were asked no less then 10 times how we were.  Honestly I have no clue how to answer that.  "Well my heart is broken, I am surviving on coffee and adrenaline, and I eat all the time." just didn't seem the answer they were looking for. my favorite is Are you handling it okay? I want to ask what is okay? Is there like a way to do it where you get a gold star?

Our life is just so different now. Our child is sick and we are powerless.  My husband is worried about his job, I need to have surgery, and we miss our parents.  I miss my brother. I am actually closer to my friends that are absolutely hands down the most amazing women.  I am raising money and desperately hoping for a change. In the midst of all that I am just simply hurting.  I never knew pain until now.  I don't know where I am getting the ability to still function and sometimes I feel guilty that I am.  How can spend time w/ my friends laughing, have sex with my husband, or plan a vacation, or enjoy a glass of wine while my kids play outside?  Joy feels wrong and necessary at the same time.

One thing I am really trying not to say or think is things like we better go on vacation before we can't anymore. Or talking about getting through this because this is Robbie's life, not some financial hardship or something. I refuse to "get through" my child's life. On my last post there was a comment and what she said about how this is still her child's childhood spoke so powerfully to me.  I will find joy in my soul for them.  I will smile even when it hurts.  I wont lie to them, we will face this honestly with humor and I hope grace. I honestly feel there are times in our lives when we are given the choice to merely survive or the choice to live and for my kids I choose living. i choose to tell them life is hard because it is,some times life is cruel, but that is what makes the good times so good.





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