Choosing joy

July 25, 2017

You know better. You know things aren’t as simple as they look in the pictures, but you can’t help yourself. You see friends, family, strangers even, with their cute little families eating pizza on the couch taking a selfie. You can’t help yourself from getting excited. You scroll to see another couple with their sweet, sleeping newborn sitting on the deck somewhere relaxing over some appetizers.

As your own child grows inside you, you can’t help but create images of the moments you and your family will have together. The park. The zoo. The pool. Target. Road trips. Ball games. Standing in line for a hysterical picture with Santa. 

After Luke was born, we were on our way to this life, to these moments of happiness that I was sure would bring me joy. I figured it would just be a matter of time before we could parade around town running errands, visiting friends and making memories. 

Don't laugh. I was young. Naivety is a precious thing.

But life, as we know, had other plans. And at 3 weeks old, we found ourselves bringing Luke to the emergency room.

We didn't even realize Luke was seizing and I started to second guess myself as the nurses in the ER tried to soothe him, figuring I was just an amateur with a colicky baby.

Within a few days, we found out that unfortunately we were not overreacting and were given the diagnosis of tuberous sclerosis (TS). Those words, when given to us on day two of our stay, meant nothing to me...but on day 16, when our 5 week old baby was wheeled back to brain surgery still being bombarded with seizures, the gravity of the diagnosis was beginning to take shape.

Luke’s seizures stopped after surgery for only 10 days. They returned with a tsunami of more than 30+ a day and we were right back in the ICU when the local doctor informed us Luke was not far from being placed in a medically-induced coma and this was to be his life. He told us we needed to except that there was not much more we could do.

We decided to kindly ask for our discharge papers and traveled to a hospital where they had a TS Clinic. They told us the disease was a challenging one, but they were going to do everything they could for Luke. And they did.

Traveling to a place where you feel loved and safe, at that point in our life, almost felt like those family vacations we dreamed of. It was our time to get out of the house, pack, eat lunch in a restaurant (the hospital cafeteria) and even enjoy just the simplicity of the drive.

TS doesn’t fight fair, even against the most reputable doctors in the field. We had moments of victory, but the therapies, diets and medications were no match for the growths in Luke's brain.

The disease was dominating Luke’s body, our family and my joy. When that hospital told us it was time to consider another surgery, I was hesitant for two reasons.

First, the previous surgery, in which I was so confident, was unsuccessful. I, his mother, had pushed for a surgery on my 5-week-old baby and it didn’t work. I just wanted it to be fixed and over, ignorant of the life marathon that is chronic disease. I wanted to get back to my life and my vision of what things were supposed to be. I was determined this would just be a speed bump on our way to “normal.” That one day, I would tell Luke the story of his time in the ICU and he would listen, roll his eyes and pull back his hair for the millionth time to show his scar and prove his mother wasn't a complete lunatic.

I live everyday wondering what part of Luke we lost when they removed part of his brain. Our doctors today have assured me over and over that it was the right move, even calling it an “emergency surgery," but it doesn't take away my questions.

The second reason I was apprehensive, was that our clinic, our home, our safety net, had told us we would not be having the surgery with them. We would be having the surgery across the country with strangers in a new land: Houston, Texas.

As we boarded the plane to Houston during fall break for our pre-surgery visit, my friends headed to the beach or camping. They were going to live the life I had envisioned for myself and my family. So I forced myself to believe this trip was better than any moment I could have imagined for myself. I was going somewhere that had something those places couldn’t give me … hope.

And then we walked into the West Tower of Texas Children’s Hospital and I got it.

Some people get that feeling when they hike to the top of a mountain or gaze into the awesomeness of the Grand Canyon. Some sit on the beach and let the waves bring them back to center or stand on a glacier and recall the centuries of life it has endured.

I was bombarded with that feeling at every turn at Texas Children’s, through valet, on the elevator, in the waiting room and appointments with doctors. The feeling that you are right where you need to be. The feeling that you are not alone. The feeling that, no matter what, we are going to be OK.

The visit concluded that Luke was having about 10 seizures a day and his brain activity, when he was not seizing, was just as chaotic. Luke had been backsliding developmentally and we were running out of time. 

We headed back to Houston for surgery with no idea when we would return home or how many surgeries would be needed. And finally, after working with the team and knowing their hearts and their talents and their teamwork, I knew I could trust the process.

Sure, I wanted to be able to be home for Christmas, or know when we needed the hotel room, when to book our flight home or when I would get to see my 18 month old baby at home, but we didn't have these answers because we weren’t leaving until Luke was better.

That was as much of a plan as I needed.

The team wasn't shaken after Luke's first surgery when he began to seize only hours after they had removed part of a tuber and placed depth electrodes to monitor. They assured me from the beginning that this wasn't a simple process. They explained there were many steps to their method. They explained the reasons why there were no definitive answers until we were in the trenches.

And I heard them. But I really didn't get it until the seizures continued and I realized no one was defeated. The electrodes were in and the doctors were getting the most precise data possible. 

Luke seized. The team collaborated. Surgery number two was scheduled. The tuber that thought it had won was finally defeated by a laser and a doctor in cowboy boots. 

We left Houston in December 2016 and Luke has been seizure free since. I am beginning to have moments when I think, this must be how it feels to be the mom in the pictures.

Swim lessons. School. Sprinklers. Church. 

These moments are precious, but I am no longer waiting on some moment to bring me joy. I am determined to find joy in all the moments, whether it be in a hospital room or a hotel room.

This disease may be stronger than medicine or therapies, but it is not greater than my joy or my love.

We all take a broken road to get to the place that changes our life. We stumble and fall and are disappointed at turns we did not intend to take. But this broken road leads us to a place of hope and strength. When we find a team that we can lean on, if only for a moment, it gives us time to breathe and remember who we are. 

We were chosen to live this life. We were chosen because we will settle for nothing but the very best for our children. We will fight. We will sacrifice. We will question. We were chosen because we will not let these diseases take our hope.

And we were chosen because, no matter how our story unfolds, we will choose joy

Luke’s story: Laser Ablation Surgery at Texas Children’s Hospital

Post by:

Stephanie Smith, mother of patient