Tag: epilepsy

Just Right

I’m sitting on the couch in our living room. A fresh fire is popping in the fireplace, and its warmth and smell are just starting to fill the room.

My goddaughter is sitting next to me. She’s not my goddaughter, but that’s the most straightforward label to use. When trying to decide on a label, I came up with introducing her as my stepmother to avoid further questions. She came up with, “Oh, you can see her, too?” if someone asks me directly who she is. We have yet to use either of them in public.

Whatever label we use, she lives with us and is part of our family. It’s been long enough that it’s weird to think there was a time before she was here, but since this is only her first holiday season with us, we want to include her Jewish background in our celebrations.

This living room is where we come together as a family, and it’s appropriate that it’s where our holidays will come together, too.

A Christmas tree, the one we’re decorating for Hannakha, lights the room, and sparkles reflect from the silver snowflakes on the blue skirt around the tree’s base. The two chairs that usually sit opposite each other are side by side with a dog in each, along with a Menora pillow in one chair and a reindeer pillow in the other.

Two blue nutcrackers are on the hutch, one holding a Star of David and one a “Happy Hanukkah” sign, bookending the television. A small silver Menora we received from her grandparents is nearby, missing the candles that will soon be lit.

Four stockings, each with an initial, hang from the banister. One is for me, one for my wife, one for our son, and the last for our goddaughter. The dogs’ stockings are missing, but maybe we’re hiding them to prevent the dogs from eating them and requiring another surgery.

It all just feels right. Just like having her here and part of our family feels right. Just like spending time with her family, either in Colorado or when they visit Pennsylvania, feels right.

As I sit here, taking in the scene, feeling the heat from the fire, the dogs and my goddaughter have all fallen asleep. I can’t help but feel a deep sense of gratitude for our blended families and traditions and our home filled with love.

Our family may not fit neatly into labels or conventional definitions, but it’s ours—full of warmth, humor, and connections that transcend titles or origins. This season, as we celebrate a holiday that is uniquely ours, I’m reminded that the beauty of family lies in its ability to grow and adapt, weaving new threads into an ever-evolving tapestry. And here, in this room, surrounded by symbols of our shared lives, it feels like home.

It feels just right.

Yet

“Yet” is such a powerful word.

“Yet” allows us to acknowledge current struggles while leaving space for future possibilities. It’s a bridge between what is and what could be, subtly shifting focus from a fixed state to one of potential.

There have been so many times when we thought we were out of options when it came to treatments for our son’s epilepsy. We tried all the medications. We tried the ketogenic diet. Because his seizures were generalized, he wasn’t a candidate for surgeries that are available to people who have focal seizures.

Each time one of the treatments failed to control his seizures, we felt resigned to give up hope.

But even in the 10 years since my son was diagnosed, there have been many new advancements.

Genetic testing is being used to identify specific genetic mutations associated with epilepsy, which has enabled personalized treatment strategies, improving efficacy and reducing side effects.

Epidiolex was introduced in 2018 to treat Lennox-Gastaut syndrome and Dravet syndrome.

A new surgical technique called Laser Interstitial Thermal Therapy (LITT) that uses a laser to target and ablate seizure-causing brain tissue precisely was approved, reducing recovery time compared to traditional surgery.

Although it was used off-label earlier, Vagus Nerve Stimulation (VNS), which involves implanting a device that stimulates the vagus nerve to reduce seizure frequency, was FDA-approved in 2017 to treat children as young as 4 years old with drug-resistant focal epilepsy.

Deep Brain Stimulation (DBS), traditionally used to treat movement disorders like Parkinson’s, is now being used to target brain regions like the anterior nucleus of the thalamus to reduce seizure frequency in individuals with drug-resistant epilepsy.

We’ve benefited from these advancements. In addition to genetic testing, my son had VNS surgery when he was nine and DBS surgery right before his 15th birthday, even though they weren’t options when our journey started.

Of course, it’s easier to be on this side of it and say that I always had hope or that I automatically added the word “yet” to the sentence “there is nothing left to try.” I didn’t. I was overwhelmed because everything we tried didn’t stop the seizures. I had almost lost my son, and I was afraid that, with every failed treatment, every door was closing on his future.

Eventually, I would be reluctant to try a door because that would mean fewer were available. At least with untested doors, there was hope. It’s like in high school, when there was a girl I liked, if I didn’t ask her out, she couldn’t say “no,” so there was always hope for a “yes.”

What changed for me was seeing the advancements and having them offered. First, there was a new medication, then another, and then the VNS. I saw first-hand how continued progress created more doors, making trying one a little less scary. I began to believe there would be more doors, which made it easier to believe in the word “yet.”

Right now, our hand is on the DBS door. We’ve cracked it open and are waiting to see what is on the other side. There are never guarantees, but we hope it improves our son’s quality of life. If it doesn’t and we have to close that door, too, when the feeling comes back that there is nothing left to try, I will remember to complete the sentence:

It feels like there is nothing left to try…yet.

‘Tis the Season

This year for Thanksgiving, we decided to do something different and we traveled back to Colorado to spend it with our goddaughter’s family.

Colorado will always be a special place for me. I met my wife there, and we had our son there. We also have some of the best friends anyone could ask for who still live there. But as much as our son wants it to be some days, it’s not home anymore.

For a few days, though, it felt pretty close, largely because of the people we were surrounded by over the holidays.

Growing up, my family would gather at my grandparent’s house. There were 14 of us: grandparents, parents, siblings, aunts, uncles, and cousins. My grandmother would cook while the rest of the family would gather in various rooms to catch up. When it was time for dinner, the adults would sit around the big table in the dining room while the kids would be at a smaller table in the kitchen. Even at different tables, we were still together.

The holidays were different after I moved with my parents to Florida. Occasionally, we’d have family members visiting for Thanksgiving or Christmas, but most of the time, it was just us, and it didn’t feel as festive or warm (except for the temperature).

I felt that sense of togetherness again when I celebrated Thanksgiving with a friend’s family after I moved to Colorado. Even though I was alone in Colorado, being with a family during the holiday gave me a sense of place.

The first few years after I met my wife, we began spending holidays with her family, and it wasn’t seamless. A pending in-law divorce with complicated family dynamics made some conversations uncomfortable, and my wife and I were also going through challenges, even before our son started having seizures. We had wonderful moments, but it was never easy.

Our Pennsylvania holidays were also challenging because our lives continued to become more difficult. With our son’s eventual diagnosis and our struggles with epilepsy, the strain our history put on us and our marriage, and evolving family dynamics and personalities, the holidays weren’t always something we looked forward to. Again, we had wonderful moments, but the effort and stress of pulling it off were exhausting. The holidays sometimes felt like they took more than they gave.

That is what made this year special. We were with people who were happy and grateful to be together. Even though it wasn’t with the family we were born into, it felt like a family we belonged to and the family we needed. It also reminded me of the holidays growing up, a feeling I wasn’t sure I would ever feel again.