Tag: family

Emily Day

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Today is the 10th Annual Emily Day.

Ten years ago today, I held my 2-year-old daughter as she had a seizure. I had no way of knowing it would be the last time I would see her smack her lips as if she were tasting something awful, hold her as her body grew tight and whisper calmly to her as her eyes watered and her heart raced. When it was over, she fell asleep on my shoulder.

Two days later, she would undergo a second round of surgery to remove what was left of a benign tumor in her brain. The neurosurgeon would also remove a significant amount of scar tissue, essentially leaving her with only 9% of her left temporal lobe.

In Boston for an appointment with a neuro-oncologist, January 2005.

In Boston for an appointment with a neuro-oncologist, January 2005.

Chatting up Daddy on her birthday in 2005.

Chatting up Daddy on her birthday in 2005.

It had been a long year and a half since she had her first seizure, prompting an emergency MRI at Children’s Hospital in Birmingham. The test revealed a walnut-sized tumor. She was immediately put on anti-seizure medication, which made her tired and irritable. Her neuro-oncologist assured us the tumor “wasn’t angry” and that we could wait to see how she reacted to the meds.

Turns out, her seizures could not be controlled medically. When her seizures broke through the meds, she had up to 10 a day. The right side of her face drooped. She began losing vocabulary. Her speech was slurred. She was sleepy all the time.

After months of monitoring and weeks of tests, her team advised surgery to remove the tumor. She had her first craniotomy in March 2005. By May, her seizures returned. We started the testing process all over again.

Day four of a week-long hospital stay for a video EEG. She's pretending to talk to her neurosurgeon on the phone.

Day four of a week-long hospital stay for a video EEG. She’s pretending to talk to her neurosurgeon on the phone.

This time, there was no conclusive evidence more surgery would result in no seizures. Charles and I were left with this decision: accept our child would have a lifetime of meds and seizures or put her through a painful surgery and hope one day she could be med-free and seizure-free. We struggled mightily with that decision.

One sunny, breezy day in October, I took her to the playground in her stroller. I put her in the toddler swing and gave her a push. I was wiped out emotionally. I sat quietly on the bench next to the swing set, listening to the creak of the swing and the wind blowing through the trees. I looked up at the bright blue sky and watched the clouds move across it.

Suddenly, these words came to me: “Be still, and know that I am God.” I took a deep breath, and I looked over at Emily. Within seconds, she began to have a seizure. I scooped her out of the swing and held her close. I knew exactly what had to be done.

The second round of surgery was not easy. There were complications. Her sutures wouldn’t close properly. As a result, spinal fluid leaked from them and dripped down her chubby face. We spent three weeks in the hospital. She had two more surgeries. The last time I handed my screaming toddler over to the surgical team, I broke down in sobs. I screamed at her neurosurgeon, “You fix it this time, because I can’t do this anymore!”

The third time was the charm. We took her home the Wednesday before Thanksgiving. I’ve never been so grateful.

Home after surgery, slighly swollen and bruised, but happy.

Home after surgery, slighly swollen and bruised, but happy.

Today, she’s seizure-free. She is sassy, funny, talented and smart. She takes meds for anxiety and ADHD, but they don’t have near the negative effects anti-seizure meds would have. She has a learning disorder in reading comprehension, which means she has to work extra hard in school and will soon have a tutor. She has very little impulse control, which means she speaks and acts before she thinks. These things make middle school difficult, because being different in middle school is the last thing you want to be.

In our day-to-day life, I forget how lucky she is to only have ADHD and a reading disorder. I forget there was a chance she’d never talk – that her vision would be damaged – that she’d never be able to drive a car for fear of having a seizure behind the wheel.

And this morning … I actually forgot Emily Day. She had to remind me. So, I’m writing this blog post as proof that I remember.

I remember it all, baby girl.

I remember your pediatrician looking at me, saying “Oh, Jennifer. That’s a seizure.”

I remember the radiologist who wouldn’t meet our eyes as he informed us the neurologist was waiting for us in the clinic down the hall.

I remember how you slept in between me and your daddy every night for almost two years so we would know if you had a seizure.

I remember how your teacher at day care carried you on her hip all day because you were too sick and tired to play with your friends.

I remember your four-year-old brother being shuttled back and forth between friends’ houses while we took you to Birmingham for appointments.

I remember keeping you up all night so you would sleep during your MRIs.

I remember quitting my job when your seizures returned.

I remember you waking up from a nap after that second surgery, your pillow soaking wet from spinal fluid.

I remember holding you down on the exam table while you screamed as the surgical residents replaced your stitches in an effort to stop them from leaking.

I remember sleeping in the hospital bed with you every night for three weeks.

I remember you walking around our house when you finally came home, saying “I so happy be my house.”

I remember the day you took your last dose of medication and how relieved your daddy and I were when your seizures never came back.

Happy Emily Day, our brave, strong girl. We love you. Here’s to 10 more healthy years.

Halloween 2015. Our Super Supergirl.

Halloween 2015. Our Super Supergirl.

Wide Open Spaces

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The kids and I spent five days in Colorado last month. It was our first post-divorce vacation, just the three of us. My Dad hosted us at his condo in Copper Mountain, and it was beautiful.

Life is full of lessons, of course, and I learned a few out in those wide open spaces.

1. Wherever you go, that’s where you are.

Each morning, I woke up before the children and sat on the balcony with a cup of coffee, a book and my thoughts. The inside of my head had been noisy. It gets that way every once in awhile – the negative self-talk crowding out the positive affirmations. I hoped the fresh air, blue sky and majestic mountain views might turn down the volume a bit.

While my surroundings were indeed peaceful and beautiful, I realized you can’t get a fresh start simply by changing your surroundings. Your demons and doubts travel with you, no matter where you go. Granted, it’s harder to hear the inner noise above your children’s laughter and the roaring of white water, but it’s there nonetheless.

The only way to truly be healthy is to do the hard work of, well, healing. It takes concerted effort to “own your shit” and to soften your rough edges. A change of scenery – even a flight across country – won’t do it for you. Only you can do the inner work. 

2. As Patrick Swayze so eloquently put it, “Pain don’t hurt.”
The day after we arrived, we rented bikes and helmets. The kids rode them everywhere. After a few wobbly circles, I managed to get my bearings. On Wednesday, we took the bikes up the ski lift to the top, with the intent of riding back down.

My son took off on his own to explore the official mountain bike trails. My father wisely suggested that Emily and I follow him down the maintenance road, just so we could get the feel for the speed and the roughness of the ride.

Let me be clear: mountain biking is way outside my comfort zone. I really don’t enjoy going fast downhill and feeling out of control. But I promised myself that I would not spend the week sitting on the sidelines watching my children have fun. So, I hopped on the bike and started down the mountain.

My brother – an avid biker – texted me to remind me that brakes only stop the bike, not the person, so I should use them sparingly. Despite, this advice, I held on to the brakes the entire way down. I did go fast … just not super fast. I managed the curves and avoided all the rocks. When I reached the bottom, I was all smiles. I looked back up the mountain with pride. I came. I saw. I conquered!

When you decide to take up mountain biking at age 44 and you make it safely down the mountain once, you should look up at heaven, say “Thank you, Jesus,” and go find another activity. You should not go back to the bike shop, trade in your road bike for a “real” mountain bike with shocks and whatnot and head back up the ski lift.

Guess which one I did?

The second time down, we all road together. Charles stayed close to me, giving support and advice. Emily rode on ahead, stopping from time to time so we could catch up. My father brought up the rear.

I rode a little faster on the second run. I was more confident, dare I say, cocky, even. When we reached the lower half of the road, Charles bid me adieu and sped off with his sister. I kept my pace, riding the breaks ever so slightly, enjoying the wind in my hair, the sun on my face, the rock in the middle of the road ….

In retrospect, I probably could have avoided the rock with a quick swerve in either direction. But in my mind I was going too fast and a sudden swerve would have definitely caused a wreck. So, instead, I hit the rock dead on. Of course, I crashed.

I remember it vividly. I knew I was going down before I started the slide. I hit hard on my left hip, knee and elbow.  I braced with my arms to make sure my head didn’t hit the ground. I skidded to a stop a few yards away, with my bike on top of me and a ton of gravel underneath.

Once I came to a complete stop, I just lay there on my side. Some hikers witnessed the spectacle and hollered, “Are you okay?” I took a full minute to assess the situation, determined I had no broken bones, and called back, “Yep! All good!”

And I really was. Sure, I was scraped and bleeding in mutliple places, but I could stand. Once I stood, I picked up my bike. Once my bike was up, I started walking with it. And then a voice inside my head said, “Don’t you dare walk that bike down this mountain. Get back on the effing thing and ride.”

And so I did. All the way down. Smiling and laughing, acutally, because what else could I do? I showed my wounds to my kids and pedaled back to the condo to bandage them up. I even ventured back to the village on my bike later that afternoon to watch Emily bungee jump and climb the rock wall one more time.

The lesson? Take risks. Feel the wind on your face. Enjoy the ride. Expect to fall. And then GET. BACK. UP. The pain won’t last forever (although my chest still hurts when I sneeze!). And scars look cool.

 

3. When the rapids are the roughest, you’ve got to dig deep.

On Tuesday, we went white water rafting on the Arkansas River through Brown’s Canyon. I saw some of the most beautiful scenery I’ve ever seen. Our guide Elvis was strict about rafting safety, but laid back about everything else in life. He followed up every stroke command with a Wooderson-esque “Alright, alright!” You could tell that he was living the Colorado life: L.I.V.I.N.

We practiced our forward strokes and backwards strokes on some open river for a few miles before we hit any rapids. “Forward one!” Elvis would call. We’d all execute a forward row. “Forward two!” he’d yell, and we’d perform two strokes. “One more!” he’d say, and we’d dutifully pull one more time.

As we approached the first set of Class Two rapids, Elvis reminded us to listen carefully to his commands and to all stroke together. We sailed through with no problem, shrieking as the cold water splashed us and feeling rather victorious.

Then it was time for the Class Three rapids, with names like Bone Crusher and Raft Ripper. Elvis shifted his tone from groovy to serious, as he explained how we would navigate through the tight spaces and down the drops.

“Here we go! Go hard! Forward One! Forward Two! One more! One more! One more! Harder! Harder! Forward one! One more! One more! One more! Alright, alright.”

I’m not sure what I thought rafting was going to be like. I guess I thought we’d paddle when the river was calm and then just ride the rapids with gravity. Turns out, we did the exact opposite.

We paddled hard as soon as we hit the rapids, and we couldn’t let up until we were completely through them. When the water was the fastest and the rocks were the closest, Elvis would yell “Harder! One more!” There were times I didn’t think I could dig any deeper or go any harder. I wasn’t sure I had one more in me. But I always did. And before I knew it, we were out of the rough and back into the calm.

After one particularly rough rapid, Elvis laughed and said, “Well, we made it. That wasn’t Plan A or Plan B. Hell, I don’t even think it was Plan C, but no one went swimming, so that’s cool.”

Here’s the lesson: You can’t coast through the hardest, darkest days. When you think you don’t have anything left, you have to dig deeper and go harder. The waters soon will be calm again.


On the plane home, the kids and I talked about our favorite parts of the trip. We agreed rafting topped the list.

“I have no idea how we didn’t flip on The Toilet Bowl,” Charles mused. “I remember looking straight down at the water and just knowing we were going over. And then we spun around, bounced off that rock and headed out of the rapids. It was so amazing.”

That’s right, buddy. We didn’t flip. We should have, but we pulled hard together, and we didn’t. We still might flip one of these days, but we’ll climb back in the raft and keep going. Together. We got this.

Alright, alright, alright.

My Hometown (with thanks and apologies to The Boss)

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I was eight years old and running with a dime in my hand
To the bus stop to pick up a paper for my old man
I’d sit on his lap in that big old Buick and steer as we drove through town
He’d tousle my hair and say son take a good look around … this is your hometown

I was born and raised in Little Rock. So was my Dad. I’ve always been proud to be a generational Little Rocker. My upbringing in my beloved hometown knit the fabric of the person I was, the person I lost sight of there for a while and the person I’m becoming again.

My early childhood was pretty idyllic. Our house was on a block full of children. We played Freeze Tag, Swing the Statue, Kick the Can and Piggy Wants a Motion (pretty sure we made that one up) late into the night during the summers.

I was on a first name basis with the pharmacist at the drugstore. He sold me ice cream and put it on my mother’s tab. My best friend and I met every Saturday and walked to Browning’s Mexican Restaurant for chips and dip. Then we squandered our allowance on video games at The Yellow Rocket. We saw movies at The Heights Theater and trespassed at St. John’s Seminary.

I learned politics and religion from my parents. My mother was the creator and sponsor of the Accept No Boundaries student organization at iconic Little Rock Central High. Her students wore t-shirts with a photo of a black child and white child hugging and a caption that read, “Nobody’s Born a Bigot.”

Growing up in the Episcopal Church, I had no idea there were denominations not accepting of anyone and everyone. I grew up under influence of strong female church leadership, including Mother Peggy, one of the first women ordained in the Episcopal Church. I remember attending an event with my mother where we walked from Christ the King Catholic Church on Rodney Parham to Temple B’Nai Israel to recognize the journey many Jews took during the Holocaust.

My children were born in Montgomery, Ala. My husband and I relocated there in 1997 for his job. I was pregnant with our son when his company closed. We entertained the idea of leaving at that point, but I had a great job. We had good friends. I loved my church. So we stayed.

Every time I’d visit Little Rock with my children, my heart would hurt. I’d spend the days driving the streets of my hometown, fondly recalling growing up in a small Southern town with lots of charm. I’d eat at all the delicious locally owned restaurants. I’d take long walks through the neighborhood, looking at houses and making up stories in my head about living in Little Rock again.

One summer, I sat at the pool with one of my best friends from high school. Our children frolicked in the kiddie pool. Coincidentally, it was the pool where my parents had been members when I was growing up. I learned to swim there. I had birthday parties there. I charged food at the snack bar there. I ogled the older boys. Again … idyllic.

As I sat there, completely content, I had what I have come to refer to as a full-on epiphany. A voice inside me said, “This is where I have to raise my children.” I’ve never believed anything so strongly. Within months, we sold our house, I found a job in Little Rock and we enrolled the kids in school and daycare.

I was home.

Words were passed in a shotgun blast
Troubled times had come to my hometown

There was a bit of a kerfuffle in Arkansas recently. You’ve seen the headlines, I’m sure. We now have a Religious Freedom Reformation Act on the books. It mirrors the Federal law, but many are still concerned – and rightly so — that it opens the door for discrimination against lesbian, gay, bisexual and transgender individuals.

Republican Governor Asa Hutchinson is considering signing an executive order creating a protective class for LGBT individuals. I truly hope he does, because regardless of the RFRA’s stated intent, there are too many people in the state who will use it to discriminate against anyone they perceive as different.

It breaks my heart that the same state where I learned to be tolerant, loving and accepting is now once again garnering national headlines for its open hatred of those considered “other.” The same state where I steadfastly believed I needed to raise my children is fast becoming the last place I want them living when they grow up.

I told a friend that I am so angry I want to throw things. I don’t know at whom said things will be thrown, but sometimes nothing gets the mad out like pitching a fit and throwing things.

Now Main Street’s whitewashed windows and vacant stores
Seems like there ain’t nobody wants to come down here no more

And that’s another thing. When I made the argument for moving home to Little Rock, I told people that I wanted to live in a city my children could make their home after college. I dreamed of them and their spouses finding lucrative jobs and raising my grandchildren right around the corner from me.

But if Arkansas continues on this trajectory – and sadly I think we’re headed for many more years of crazy before it all dies down – there will be no lucrative jobs to be had. I am firmly convinced that no 21st-century companies will choose to set up shop in a state now known as one of the most anti-gay states in the nation. Plus, the businesses that are here now are going to have a hard time recruiting bright, talented, hard-working individuals to move here to work for them. I will have a hard time encouraging my children to stay.

Would the last forward-thinking, open-minded, whole-hearted individual to leave Arkansas please turn off the lights? Oh wait, never mind. We’re already living in the dark.

Last night me and Kate we laid in bed
Talking about getting out
Packing up our bags maybe heading south
I’m thirty-five, we got a boy of our own now
Last night I sat him up behind the wheel and said son take a good look around …
This is your hometown.

I asked my children a year or so ago, “Do you feel like this is your hometown even though you weren’t born here?” My son said, “Oh yeah. I don’t even remember Montgomery. This is where my friends are.  This is home.”

The other night, Emily and I were in the car driving east on Cantrell Road. We had just left my dad’s house and were heading to school to pick up Charles after his baseball game.  It was one of those spring nights where it’s just warm enough to roll the windows down.

As we cruised down Cantrell Hill from the Heights to Riverdale, I caught a glimpse of downtown and the Capitol. I looked over at my daughter, happy and content. I thought about how many times I’ve driven down that hill … first as a passenger with my parents, then behind the wheel as a teenager, now with my own kids.

Suddenly I heard that voice again, the same one I’d heard at the pool more than a decade ago: “This is where I have to raise my children.”

It’s not time to leave. There’s still too much good here and too much to be done to make this state better.

I smiled at Emily and turned the radio up. The wind whipped through our hair. We sang loudly to Taylor Swift, as we drove the streets of our hometown.