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.

Friday, September 20, 2013

Letters To Our Daughters...

Dear Laynie, Riley, and Peyton,

So I missed last month :(  I hope to make up for it!
In the last two months we've had a great trip to NJ and NY where we saw
lots of family and some great sights in NYC.  We also saw the start of a new school year,
Riley's 8th birthday, a quick one-night trip to Orlando and Cocoa Beach
(which always end up being some of the best trips!),
the start of a new year of activities (soccer, horseback riding and dance)...
it's been busy!
I read something this morning that I keep going back to in my head.  It
truly reminded me how it's the little moments that are so important and special to families.
I really hope you always know how much I love you and enjoy all of the little 
things we do every day.
I know I sometimes seem frustrated and I need to work on that.
Learn to just relax more.
There are three months left to the year and I'll write you each one more 
personal letter.
I'll leave you with some of my favorite memories from the last two months.

I love you girls,

Please continue through our monthly blog circle to Ashley's blog to 
read her letter to her little one...

Friday, July 19, 2013

Letters to Our Daughters

Laynie, Riley, and Peyton,
I have been so enjoying this summer with you girls :)
I am so lucky to get to spend so much time with you...
all three of you are getting so big and changing so much every day.
I can't wait to take you up to New Jersey and New York next month.
You will get to see New York City for the first time, spend time with 
family, and check out the boardwalks.  Next month's letter will
be full of pictures from that adventure I'm sure...
For this month, I have some photos from another great trip we had...this one
just for one night to Orlando and Cocoa Beach...but we had so
much fun (as always).

I love you sweet girls.

Please continue through our monthly blog circle to Kelly's Blog
to see her letter for July :)

Sunday, May 19, 2013

Letters to our Daughters

To My Sweet Beach Babies,
My entire life (all 37 and 10 months of it) have been spent living
within 25 minutes of the beach.
First, in New Jersey...exactly where Hurricane Sandy hit last year.
Then, here in Florida, where I've planted my roots and had my family.
From the time you were all little, you have loved the beach.
As have I.
I've always thought of it as our happy (almost) always 
get along there.  You have such a great time.  Whether it's building sandcastles,
boogie boarding, swimming, or just relaxing.  
The beach is a magical place.  
I love that we live here, where we can enjoy it a good 9-10 months of the year.
We have the West Coast (close to home) with it's calm Gulf waters and soft sand.
The East Coast with the Ocean and it's waves (which remind me of my hometown).
And of course the Keys.  Which is a place of it's own.  Where else can you watch
the sunrise in the morning and cross the street to see it set in the evening.

The beach is a special place for us.
We've had so many special memories there, and I'm sure there are more to come.
I look forward to each and every one of them.

Here is a picture of Mommy on the beach in NJ with
Uncle Rob and Uncle Brian...

Here are some photos of you girls on the boardwalks in New Jersey...

And of course some from our beaches here in Florida...

I love you girls.
Love, Mommy

Please continue on through our Blog circle to read Carrie's beautiful
and heartfelt letter to her three little ones.  And of course
see her beautiful photos!

Friday, April 19, 2013

Letters to Our Daughters

It is sad how fast time goes by.
I feel like just yesterday I wrote Peyton's letter.  
In that month we've had a sixth birthday, Easter and a trip to the East coast.
How is it that time just passes us by?  
How is it that I now have a 10 year old, a 7 and a half year old, and a six year old?
I sometimes wish I could just freeze time and keep you all my little girls forever.
I am so not ready for what will come in the future (middle/high school, boys, all the 
drama that I know girls bring).
I know that you are all good girls...sweet, kind and respectful.  
I wish I could just wrap you all up in my love and keep you safe from the world.
Instead I'll just have to trust.  And that's hard.
I love you all to pieces.

Please continue on in our blog circle to Darleen's blog
to see her letter to her son!


Wednesday, March 20, 2013

Letters to our Daughters

My Peyton,
I am finally ready to write about my sweet youngest girl.
You are kind, funny, smart and oh so loving.  
When you came into our lives, you introduced us to an entire new world.
My eyes were opened in ways I could never have thought possible.  I was so scared for you,
and was so worried.  Once I held you in my arms I realized how blessed I was to have you.
I know life will be rough for you at times, and my heart breaks into a thousand pieces when I think
about that.  But then I see your smile, and it helps me see that you will be okay.
You are so independent, always doing everything for yourself and never wanting to ask
for help.  I love that about you.  I also love that you fit into my lap so perfectly still, not many
people are lucky enough to be able to snuggle their (almost!) 6 year old like that.

I can't believe you are going to be 6 in just a couple of weeks.  Where has the time gone?
These years have flown by.  I have to thank you for what you have taught me.
I am truly a better person for being your mother.  I've also met so many
wonderful people that I never would have known if it wasn't for you.  
I hope as you grow up you always know that I am here for you.  I will
protect you and love you for the rest of my life.

You love your sisters and look up to them so much.  I love to see
the three of you together (when you aren't fighting, of course!)
You are getting better at reading every day.  I love seeing how much you have
learned in Kindergarten!

I love you so much sweetie.
Love You,

Please continue on through the circle and read Allison's Blog
to read her special letter to her little one!