Loving you is RED

The stage is set, the crowd is fierce and we are ready. The tickets are in hand, our Taylor Swift gear covers most of our body and a few Dollar Tree glow sticks light up our wrists and neck.  We've anticipated this concert since the last time we saw Taylor when you were just five.  A new haircut, a dinner date with your BFF at Z'tejas, a pretzel and a drink were some of the moments we share just before we find our seats in section 207 row 11 seats 17 and 18.
We settle in nicely and dance fluidly to the opening acts: Florida Georgia Line and Ed Sheeran.  You are full of emotion.  Smiles, hugs and kisses are flying everywhere.  The lights go down, the screams echo off the ceiling of the AT&T center and we jump up and down with excitement.  It's show time!

We smile at the entertainer that is Taylor Swift.  You reach over and gently kiss my cheek and yell into my ear, "This is the best day ever."  We listen to a few songs and then you start to cry.  You are sleepy but don't want to sleep.  You want to watch Taylor but the medicine you just started taking makes you sleepy.  Tears stream down your face and I try to console you.  We decide to take a break downstairs and rest quietly just outside the main concert area.  I can still hear the music as you settle in to rest your heavy eyes.

I sit there in sadness and hold myself together for you as I rub your back.  Taylor Swift fans are passing by and giving me their regards as they see you rest peacefully on my legs.  I sat there wishing I would've just skipped your nightly dose of medicine for just this one night.  I start to breakdown and cry.

The concert ends and you wake up.  You are in tears upset you missed it and upset that you made me miss the concert.  I start to ball again.  We cry a little more and then calm down just long enough to meet up with Kierstan and Tina to head back home.

We stop at McDonald's on the way and grab a burger with pickles (you recently discovered you love pickles).  When we arrive at home, I immediately look up future concert dates in hopes we could find a nearby concert soon and relive the moments we missed.  You get excited and start  thinking of strategies for making it through a future concert.  Some of your suggestions are to miss the opening acts or to take a nap before we attend the concert.  I instantly agree and appreciate your outside the box thinking skills.  We break down crying again and you are still full of sadness because I missed the concert.  I had to stop you to ask you who was the mother and who was the child as you are concerned about my feelings.  We hug as tight as ever and then have a pajama party in my bed.  It's 1:00 in the morning but I don't care.  We are going to finish this night off right.

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I'm sad we had to miss the concert and although I really want to see Taylor perform, I am proud of you and am thankful to have spent this day with you.  The moments remembered above may not seem perfect but they are just that.  You have come a long way Ashley.  Sometimes it takes a big concert or a little moment to realize just how far you've come and how important we are to each other.  At the end of the day, these are the best days: my favorite.  Loving you is RED.


xoxo,
mommy

With Open Eyes

I cried all night and every time I thought about your future, I cried a little more.  I spent hours reading reviews online in regards to the medicine the doctor had just prescribed.  I want to trust him and give you the medicine so you can be your very best but at the same time, I want to trust my gut and not give you any of it.

If I could turn back the clock, I would've never given you medicine at such a young age.  It changed you. It changed us.  In desperation to end the judging we were receiving we succumbed to the pressure and put you on medicine.  Daddy cried the entire day on the day the doctor recommended it to us.  He was mad at the doctor, mad at the medicine and mad at me for filling the prescription.

Everyday I wonder if there will ever be a day where medicine is no longer needed.  I wonder what is happening to your body and I am fearful of the longterm effects it will have on you and your adult life.

For now, I have to trust that what the doctor is recommending is the best choice for you.  I am hopeful.  You've now been on this medicine for a week and so far it seems to be having a positive effect on you.  You're smiling from cheek to cheek like you did before you had your seizures.  You eat a lot more and sleep more but you seem genuinely happy.  I am happy for you.  I am happy to see the real smiles and real emotions you somehow lost along the way.

I know it's tough right now.  We will push through and we will always be here for you. You are a shining star and one of a kind.

We love you!!!

Here's your favorite song at the moment and it's fitting for what we are working through.

Look around, it's dead at night
You've been losing every fight
Your hope is, feeling broken
Your feet are rough, they're scraped and bruised
But still have strength to take you through,
Into,
The dark

Just close your eyes
And push right through
I know it's tough right now
This was meant for you
When the clouds are gone
Not a shadow in sight
You'll be drenched in the sun
With open eyes

At the beach, the waves will crash
Tuck and grab and pull you back
The sun may, be covered in gray
The sand will itch, itself may burn
Hurricane will take it's turn
Until,
The dawn

Just close your eyes
And push right through
I know it's tough right now
This was meant for you
When the clouds are gone
Not a storm insight
You'll be drenched in the sun
With open eyes

So close your eyes, shut them tight
Let it be, and it will fade away (fade away)
Push on though the strength in you
Let it be, and wish it all away (all away)

With open eyes,
Open wide,
It's all good now, watch it fade away,
Day by day

Just close your eyes
And push right through
I know it's tough right now
This was meant for you
When the clouds are gone
Not a storm insight
You'll be drenched in the sun
With open eyes.

when are we gonna set this circus down?

A few years back I ran across a friend who looked me square in the eyes and told me I had to find the good in every little thing Ashley did instead of harp on or seek out the bad.  I took her advice into consideration and began to change my way of thinking and little by little I taught myself to do just that!  If you ask me how Ashley is doing -- I will tell you she is her best self yet! 

While this is true, I still feel like we are a family running a circus act, juggling the unknowns and new challenges of Ashley's various neurological disorders.  The act of preparing her medicine each day cripples us and has us constantly asking questions and seeking alternate methods to help Ashley continue to be her best self.  How at age 9 can a child possibly need 5+ pills a day and what does this constant dosage of medicine do to her poor little body?

We eagerly went into the hospital today for an EEG with the hopes the doctor would see no seizures and take Ashley off of the anti-seizure medicine she has been taken for years now.  Her EEG came back significantly better than her last EEG; however, Ashley had an active seizure while in the doctors office.  The worst part is that I had no idea she was having a seizure and my response was she does this all the time.  What?  How could I not know this was a seizure?  I felt horrible and at the same time I was mad--mad at those seizures.  I just wish they would go away.

The doctor made a few changes to her medicine intake and we were on our way.  We've been to a few specialist in the past few weeks and they made some recommendations we are putting into place but I can't help but wonder when are we gonna set this circus down.  I realize Ashley has it a lot better than most patients we see in the neurologist office but can't help but hope her little brain will mature and develop as it should and that Ashley can live a normal life free of medicine, doctors visits, social awkwardness and dependance of others.

I'm hopeful.

perfectionism killed my ambition

I'm in a constant battle with myself to be perfect, so perfect it kills my confidence - my ambition.  Today, I allowed my spirit to break and sat in silence as I moped around wondering how I could be a better photographer, a better mother, a better person.

I've come a long way over the years but today the need for perfection, the need to be the very best and to do the very best just about had me giving up my love for photography.  Tomorrow is a new day.

"Mom & Dad, listen -- this song is sad"

Yet again, we enter a new phase of growth for you and a new phase of sheer emotion for both.  Most of the time you have been unable to feel the emotion coming from another person.  If you have felt it or noticed it, it was because you had been taught that a smile means happiness, a tear means sadness and a loud voice meant anger.  But recently, I've seen you feel emotion from me as well as emotion in song and on T.V.  it's a bit overwhelming for me to see because I've never really seen it from you.  While I have hoped for you to get to this point, I have also worried how it would all work out when you started really feeling the emotion of events happening around you.  While we're making strides, we're still not all the way with feeling emotions as the other day during an emotional sound byte on The Biggest Loser, daddy & I were in tears and you just stared at the T.V. and wondered why we were crying.  And just when we thought you were crying during a sound byte later on in the show you turned to me to tell me you were only in tears because daddy passed gas and it stunk.  -- Oh Ashley!

You continue to make us laugh on a daily basis and even though home work hour is like groundhogs day and the worst part of our time together -- I still wouldn't trade it for a thing.  You make me stronger, you push me to have the utmost patience and you make me think of new ways to make learning fun and approachable.  I am thankful for you and your adult-like personality.

I am holding on tight hoping the next nine years don't move as fast as these first nine years.  And no matter how old, every year around this time -- I start to cry and get emotional about you growing up.  It is hard to believe that in just a few months, you will be bridging to a junior in girl scouts and entering the summer as a 4th grader.

Everyone told us it would go by fast.  I never really believed them until recently when I blinked my eyes and you turned nine.

sometimes you gotta just be YOU!

sometimes you gotta just be YOU!!  No ADHD altering medications -- just YOU.  The days are longer, the moments more challenging but the payoff is worth it.  Your smile lights up the sky, your laugh infectious, your hugs are the size of giants and your love the size of mountains.  Daddy says, "He loves these days."  I do too. 

Girl, you're amazing -- just the way you are!

xoxo,
mommy & daddy

Your "Golden" Birthday

A friend taught me a few years back how every person has one golden birthday in their lifetime.  It sounded interesting to me so I further investigated the topic and found that it's true.  Your golden birthday is the age of the date you were born and is suppose to be the most magical birthday in your life.  I'm sad to say I don't remember much about my golden birthday as it happened on my very first year.  However, for Ashley, it's a different story.  She was born on the ninth day of the month and would have the opportunity to enjoy and remember her ninth birthday.

Knowing it was just around the corner, we planned for the best birthday yet. We started the day off with a party at Chuck e Cheese and followed it up with a slumber party by inviting Ashley's cousin, Kayla, a few friends from school, gymnastics and girl scouts.

The party at Chuck e Cheese was a smashing success and had a mix of family, girl scout friends, school friends and Gymnastics friends in attendance.  It went by so fast though, we barely had time to open presents and pull the pinata strings from your pinata.  With help from your cousin and a friend, we quickly organized everything and headed home to prepare for your slumber party.

"Ding Dong."  This was the so called buzzer that started your first ever slumber party.  You ran to the door and eagerly answered it.  five more doorbell sounds later and everyone was ready to celebrate your birthday and enjoy a night full of laughs, food, dancing and more.  We started off the party by handing each of your friends a gift for coming.  It was a new and cozy blanket to use during the night and to take home with them.  This was definitely a hit and everyone walked around all night carrying their blanket.  We followed up with a couple of rules and your one and only rule that night was NO ONE IS ALLOWED TO TOUCH MY ELF, ROSY BOB!  In my head, I was thinking there is no way this could happen as Rosy Bob was perched at the top of our nine foot Christmas tree.

I ordered a pizza thinking I'd be the worst mom on the planet if I didn't feed you girls something more than chips, smores and popcorn.  I decided to throw in an order of bread sticks for me.  The pizza delivery man arrived and mistakenly rang the doorbell.  You would've thought he was one direction standing at our door.  Screams echoed the hall and the poor guy was left standing on the porch in shock.  I smiled, paid and quickly handed out the pizza.  Every.Single.Piece.Was.Eaten. -- What???

The night carried on and y'all engaged in hilarious conversations, caroling in the driveway, rocking out to Just Dance 4 on Wii, eating various types of snacks, pizza and drinks as well as taking fun photos in the white box (see below).

You received a nerf gun for your birthday from Cooper and y'all decided to take it out and play with it.  It ended up in Kayla's hands and before we knew it -- Rosy Bob had become the target of a girls sleepover and Kayla was shooting at your elf while the girls surrounded the tree laughing and rooting her on.  You too, were in the middle of the fun and enjoyed watching your elf get shot down by your own nerf gun.  As the fun continued, he eventually started to fall and then finally did fall to the bottom of the tree.  Your friend picked it up and while I started to panic.  I quickly said in a laughing voice "drop it, drop it.  You can't touch the elf or he'll lose his magic powers."  She threw the elf into the kitchen and as I turned around you were running to my bedroom in tears.  You were truly saddened and worried the elf had lost his magical powers.

Still in a panic, I quickly grabbed the book and said if you read the book again, your elf will regain it's magical powers.  I have to say, I've never seen you so eager to read a book.  Y'all read the book and we grabbed a spoon from the kitchen, picked him up and placed him in a candy dish up on our book case.  whew! HE WAS SAFE AGAIN!

The slumber party carried on and you shared a few more laughs and stories with your friends.  In the morning, y'all woke up eager to see where and if the elf had moved.  You quickly discovered he had rolled down the stairs in a roll of toilet paper and everyone shared in the joy and spirit of your elf, Rosy Bob.

I sent text updates to daddy and he laughed so hard he cried.  And on this day, your ninth birthday -- we saw you experience the moments we've always hoped you would have.

Happy Ninth "Golden" Birthday Ashley!  May it be one of your best memories yet!