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.