Wednesday, October 7, 2015

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.

Sunday, February 22, 2015

So I should be sleeping...but I used to have this blog.

Well Hello.
I should be asleep...and I was in bed, but started thinking and decided to come downstairs, open up a beer and write.  Yes, I'm drinking and writing, don't judge.

A few days ago I was updating my photography website and came across the link at the very bottom for my personal blog.  I started this blog when I had Peyton, and I couldn't believe how much my world was turned upside down by having her.  I wanted to share my experiences with everyone.  

Hindsight I tell you. 
 Having a child with Achondroplasia was surprising, challenging, name it, it was it.  But having a child with a non-curable disease just doesn't compare.  But I am going off-tangent (when you are not a writer and try to be late at night that happens).  My point was that I clicked on the link to my blog.  And I saw these wonderful letters I was writing to each of my girls.  
They brought tears to my eyes.  The last one was dated September of 2013.

Riley was diagnosed with Juvenile Dermatomyositis (JDM) in October of 2013.  

When you take your child to a dermatologist for a rash on her elbows you don't expect to be told that she has a potentially life-threatening disease that affects not only skin, but muscle.  It can cause debilitating weakness, pain...affect lungs, heart, name it.  Now I have to say, we have been lucky.  We started treatment before muscle involvement started.  That said, being lucky still means rashes on her elbows, calcium deposits that love to open up and become infected, stomach pains from the medicine she takes (at least we think that's the tests can tell us otherwise), headaches, multiple IVs to the point that her veins are scarred and just done, doing at home infusions, hospital infusions, countless days missed of school, a 9 year old girl never feeling perfectly good, extreme sensitivity to the sun, crankiness from it all...Plus all the other stresses.  It is hard on a family to handle all of this.  She has to be put first often...when you have 3 kids that is hard.  There are many appointments to get to, which leads to missing work...which for me unfortunately meant losing my dream job.  

But enough whining and is what it is.

But what is sad is what gets pushed aside when things are stressful.  Things like writing your beautiful daughters letters so that someday they can see how important they were in your eyes.  And my three girls truly are.  I do sometimes have to question why we were dealt the hand we were.  But it's too easy to say life isn't fair.  It's a fact, it isn't.  We are going on a Make a Wish trip in a few weeks.  And Riley is the child honoree for the local Arthritis chapter.  These things are awesome and we are blessed.  However, you sometimes just have to sit and think...are you kidding me?  How did these things end up being such an integral part of my life?  If I had read all of this stuff 20 years ago I would never have believed it.  

We are lucky that we have family and friends who support us and help us get through it all.  We love you all.  I love my girls.  Maybe I'll try to write more often, but who am I kidding...I probably won't.
For now enjoy a sweet photo or two of my loves.