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.
