2015 has proven to be a tough year with many ups and downs. It's been 15 straight weeks of crying and I see no light at the end of the tunnel. My days grow longer and my nights are nearly non-existent. My mind struggles to find peace and balance and the anxiety grows at an exponential rate.
At the end of the day, I'm not sure I can even fathom what the future holds. Some people take it years, days, or hours at a time. I'm down to just seconds. I struggle to believe that god doesn't give you more than you can handle.
At the same time, I sit and stare in silence and can't imagine life without you. You are my everything.
YOU GIVE ME PURPOSE.
I put my two feet on the ground each day because I know you need me. I'm giving it all I've got.
We're knee deep into Ashley's first year in middle school and it feels like a horror movie that won't end. We keep trying to run from the scary negative parts that come with a transition so big and unknown but we can't escape. The worst part is experiencing something so traumatic and scary and not having the balls to talk about it or feeling like it's judgement day if you do speak up.
Who wants to hear how your life is not perfect or how hard middle school is for your child; the homework is overwhelming, and the thought of college for your kid seems hopeless. Everyday you're expected to wake up and be your best self yet. Yet, everyday for the past 13 weeks -- all I've done is cry. Cried at the hopelessness I feel, cried that I didn't have the patience I needed every day to remain calm, cried that my child had so much anxiety about a place that use to be the one sure thing that put a smile on her face, and cried because I had no idea how to make any of this better.
I've put my crying eyes on my husbands shoulders so many times this past thirteen weeks that I've lost count. And every time, he holds me tighter than the time before and tells me everything will be ok and every time I cry a little harder.
So why is it that I feel ashamed or sad to express the hardship and horror our family is experiencing? I think the hardest part is that a lot of the things we're experiencing is because of mental neurological challenges that are not seen by the eye or that we've been judged by many for the last 7 years, it's really our own fault we have these challenges, or the fact that I shouldn't be sad or complaining because there are people who have it far worse.
In our house, many days mimic a roller coaster ride: we are on top of the world and then at moments notice experience the steepest lows and are even flipped upside down not knowing where we're going next. My house is a constant mess. The old milk-filled-bowls remind me of the sadness I had two nights before, the drink next to my computer reminds me of the numerous hours spent working on my photography business, and the papers from school piled together with gym clothes remind me of the anxiety our family experiences with having a daughter with academic challenges in the public school setting.
All of these visual images store as photographs in my head that serve as a constant reminder of the adversity we face on a daily basis.
I've heard it a million times before, "Life moves faster the older you get." As I age it becomes more clear just how fast life appears to be moving. It's been over a year since our last family blog post and although I've thought of many things to write about, nothing has transpired.
So another AMAZING summer has past and I quickly realize how awesome and precious this warm season really is to me. Our summers are spent planning and spending as much time together as possible while still maintaining a healthy balance financially and professionally. The great part about being an entrepreneur is that you can control most of the hours in your day or at least modify them. There are exceptions to every rule but you get what I'm saying.
This summer, we planned minimal camps for our little one, an outpatient surgery, a few short vacations and a BIG trip leaving a lasting impression on us and an official time stamp in our memory. We started off by attending Volleyball and Basketball camp and then an overnight camp at the nearby youth camping grounds. Shortly after, we planned an elaborate visit to Ireland to visit old friends and meet new friends. Little did we know it would be the trip that changed our family's life forever.
I tear up reflecting on the big changes that came with our visit to Ireland and have to tell myself everyday since this trip that -- "Sometimes People Forget Their Own Greatness." Sometimes being a parent makes you lose yourself and change who you are to cope, adapt and appease your surroundings. After time, you don't even realize you've changed and you forget how great you are. Parents, friends and family tell you what you want to hear vs. what you need to hear. So as we journeyed on an adventure of a lifetime and our first time to Europe, we also took a step outside our comfort zone and attacked the big beast in the room -- CONTROL or the lack of it.
I learned very valuable parenting skills and how to use them in various settings. I was so amazed and cried at night wondering why no one had ever shown me this before. In my mind, I have been doing the best that I can each and every day. I'd read self help books, motivational books, talked to counselors, doctors and other parents and all I ever needed besides you're a great parent was THIS IS HOW YOU CAN BE A BETTER PARENT.
The trip was definitely the highlight of the summer and I can't believe at age 10, our little one put her first overseas trip under her belt. After our return from Ireland, we continued our traditional summer trips to Fiesta Texas, Sea World, and also joined Lifetime Fitness, where we worked out and frequented the pool on days when Fiesta Texas had lines too unbearable to stand in.
Ashley continued Kumon and although tough at times, muscled through the hardest days and slowly bridged the gap on reading and math.
John and I saw Sound Garden in concert and ventured to L'auberge for our wedding anniversary. Ashley spent her first sleepover at Mimi and Herkie's without us! We missed her though, so headed back a day early to sweep her up and head back home.
Summers around here are often jammed packed and make me think back to the days when I was just a child - my parents made sure we always had the best times and made the best out of everything. To this day, one of my favorite summer memories is a road trip we took as a family. My cousin Jeff came with us and got sick on the way back from vacation. We had to pull over a few times and the stories we have -- make me feel like I'm 11 all over again. Life is about the journey and the relationships we build as we are on our journey and I can't wait to see what next summer's journey will be all about. Where will we go? How will we grow? We shall see!
blink and you'll miss it. stop and you'll cry. I've opened up this
new blog post to a blank white screen to share with you our. best.
summer.
ever. and I'm already in tears. If you asked me to describe what summer
should be like, this post is it. Grab a snack, kick back and get ready
to read as we rewind and take a look at our best summer ever.
I
was almost certain this would be a tough summer because our niece,
Kayla, was going to be gone for eight weeks. This doesn't seem like a
big deal except for the fact that Kayla practically lives at our house
during the summer. While we missed her dearly, we made the best of our
summer without her and when she returned -- had her makeup for
her time away from the Jansky house.
Just like every
year, our summer started off at full speed. Ashley attended overnight camp
and did very well. So well, that they cheered when she said she'd be
back next year. This was a huge milestone for us. It proved that
Ashley can do anything she puts her mind to.
While
Ashley was away at camp, John and I took a mini bustrip with friends and family to LauBerge. We had so much fun -- but we also missed our
little one. We also managed to get out and see an adult movie --
together!
As the summer carried on, we put Ashley in a
fitness boot camp to keep her active and to wear her out. If you know
our little one, running a marathon would only burn half the energy she
has. She also did gymnastics on the days she wasn't at the doctors
office or occupational therapy. At the end of May, we enrolled Ashley in Kumon and added reading tutoring with Ashley's Kindergarten
teacher. We were determined to keep her reading the entire summer. IT
WORKED!!
She attended Vacation Bible School and enjoyed seeing her classmates from school and singing all of the fun songs. Like last year, Ashley attended Rock
Lobster Festival and sold lemonade. She did so well, our
our employees asked to sell lemonade next year. She had to put most of it in savings and some she
saved for a trip she didn't even know she was taking.
In
July, we did the annual 4th of July parade, followed by fireworks and then went to
the circus with cooper, ashley's friend, and saw Monster's University
with her BFF, Kierstan. In between all this we squeezed in trips to the lake with the Williams family, Trips to Sea World, Fiesta Texas and Splash Town as well as a trip to Horsehoe Bay.
At
the end of July, we did the ultimate surprise announcement to Disney World just one hour before we were scheduled to leave. We then surprised her half way into the trip by picking up John at the airport. (More on this awesome vacation in a separate blog.)
In
August, we visited John's family and went on a little trip back to
Lauberge with Kayla and Ashley. We watched Fifth Harmony sing at La
Cantera, Celebrated our 11th wedding anniversary and took our annual
family photos!
I love SUMMER. I love it so much, I don't want it to end. We have the best summers and I know Ashley will remember all of these good times!! I know I do. Here's some other things I always want to remember about the summer of 2013.
What's hot?
- The cups song by Anna Kendrick
- Miss moving on by Fifth Harmony
- We Can't Stop by Miley Cyrus
- 22 by Taylor Swift
- Frozen Yogurt from Orange Leaf, Menchies or Yogurt Zone.
- Big Brother
- Sam & Cat
- Spongebob
- Good Luck Charlie
- Full House
- Sketchers Bella Ballerina Shoes
What's
new? - Pickles. Peaches. Pink Lemonade. Grapes. Mushrooms. Asking to
speak to the manager at various restaurants around town. Not to
complain -- Just to say hello.
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.
----------------------------------
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.
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.
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.
