Pity Party for One

So it’s been a while…and I will warn you, I’m in a mood.  I’m laying on a shitty hospital pullout with nothing to do but think. 

I’m tired.  I’m tired of medicines, hospitals, and IVs.  I’m tired of staying at the hospital in Gainesville.  I’m tired of seeing Riley in pain, of picking her up early from school because of headaches, of her sleeping in my room every night.  Tired of worrying about her future…thinking about the fact that 20 years from now when she is 30 years old she will still be dealing with this disease.   I watch kids in the infusion room ring the bell for their last cancer treatment and a small part of my heart breaks, because while I am so happy for those families…for Riley there is no last treatment.  No end.  We will never ring that bell.

I am also tired of worrying about Peyton.  Worrying about everyone treating her ok at school, worrying about her growing up in a world that thinks nothing of mocking people who are different.  Worrying about her becoming a bitter person because of it all.

I have been really trying hard to embrace what we’ve been handed, and try to make good come out of it.  Generally I truly enjoy running our Jingle Bell Team, speaking at events to educate people and raising money to help.  I also feel it’s important to educate people about Peyton’s difference, or really that she isn’t any different –just shorter. 

But here is where it gets ugly…on days like today when I was up at 5 to drive 2.5 hours to the hospital and sit here until Friday while Riley is pumped with what is basically poison and my other two girls and husband are home I am over it.  I want a life like pretty much everyone else…where I can just go about my day with stupid worries, where there is actually time to volunteer at my kids school.  Where my mind isn’t constantly worried about medications and appointments, and trips to DC to see specialists.  Where I can just donate money to other peoples causes and go about my day, knowing that while I hope the best for them, that it doesn’t affect my everyday.  Sometimes I don’t want to have to teach people for people to all be treated the same.  People should just know that and not be so damned ignorant. 

My pity party for one is over for now.  Of course my ramblings are all over the place…my apologies.  Obviously I know everyone has something going on in their lives....and that no one's life is perfect and all that.  I understand and respect that.  However, right now I could just use a break.