There Is No Map For This Journey

The Tale of a Warrior Mama and Her Dancing Queen

Izabelle Hamlin is the star of her mother’s Facebook page. In one particularly vibrant video, the 9-year-old is wearing a star-studded pink pullover and pink pants to match. Her large, dark eyes are framed by a pixie cut. She is dancing to the beat of a booming Disney soundtrack. At first glance this post is nothing out of the ordinary. Every day, by the hundreds, parents post videos of their children, capturing their hammy acrobatics and hijinks for all to see. But there is nothing ordinary about this little girl’s groove. Instead, on this day, Izabelle’s body is moving the way she wants it to and not in the way her seizure-stricken brain says it has to. And here is the recorded proof: In this moment, Izabelle is a little girl like any other, a whirling dervish in her toy-scattered living room. Her mama calls her The Dancing Queen.

Rachel Hamlin is Izabelle’s lioness of a mama.

“We had a wonderful first four years,” she grins. “Izzy was a happy baby. Everything was normal.”

Life was hectic, yes. The primary breadwinner, Hamlin had returned to her work as an art teacher when Izabelle was still a baby. But however draining it was to maintain her little family, she had sweet Izabelle beaming up at her when she walked through the door.

Over time, though, there were signs that something wasn’t right. Izabelle would run to her dad, climb into his lap and go oddly rigid. She was verbally and socially delayed. But Hamlin wasn’t alarmed, not yet.

And then came the day in 2011 when Izabelle was 4 and Hamlin found her in the kitchen holding an orange. She seemed to be frozen in place, gripping the fruit, her tiny hand vise-like. Something was terribly, undeniably wrong. Within weeks Izabelle would be diagnosed with a rare form of epilepsy.

“A common pattern of parenting a child with medical issues,” Hamlin explains, “is that often the worst comes when we are at home alone.” She has spent countless nights holding her unconscious daughter in her arms, post or mid-seizure. Ten fingers aren’t enough to count the number of drugs that Izabelle has been on. Both epilepsy and the treatment it necessitates have had a profound effect on Izabelle’s personality and behavior. Her short-term memory is severely impacted. She has no attention span; behavior and learning incentives don’t work because she forgets what she was excited about learning in the first place. The emotional exhaustion takes a toll on Hamlin. “Sometimes she’s totally out of it or really aggressive … I miss my sweet girl when that happens,” Hamlin whispers. “It is lonely but I am a warrior mama. Izabelle is a warrior, too.”

Once Izabelle was in the hospital for seven days, unable to disengage from the snake of wires that enabled the doctors to monitor her brain activity 24/7. The hope was that she would be a candidate for a surgery that can significantly reduce seizure activity. Instead it was discovered that she was having up to 40 seizures a day.

While in the hospital, mother and daughter spent hours coloring, cutting out snowflakes, watching Disney movies. The mothers of chronically ill children have a boundless variety of distractions up their sleeve. Hamlin has more than most. At the end of that grueling week, it was decided that Izabelle would not undergo surgery. Her seizure activity was too widespread. “That was a low point,” Hamlin reflects. “After all that hell … it was for nothing.”

Eventually Hamlin found other families who, like her own, had exhausted nearly every medical option. She mined tremendous support from an online forum for families who had used medical marijuana to positive, or at least promising, effect. Hamlin too found that Izabelle saw some decrease in seizures on low doses of the medicine. And she found sanity in a community of others who understand the frustration she faces again and again.

Hamlin keeps a blog to record life with Izabelle. It reads like a living travelogue of sorts. Her writing brims with faith and pride, fear and anger. It is flamboyant and forthright as she intimates her experience, giving straight answers to all those sleek memes and condescending edicts: Always stay positive; make lemonade.

Sometimes she writes about being shattered, stripped to the bone (another seizure-laden morning, another disappointing doctor’s visit). But there are moments so tender it burns to read. In one entry, Hamlin describes the strength she witnesses in her daughter every day. Healthy moments are savored—small, radiant miracles. In those instances, seizures become the shadow monsters they are.

Mother and daughter take nothing for granted. Their journey has no map—but still they forge their own path. And they dance.

Learn more about Izabelle and Rachel’s journey:

Alicia Fisher is a poet, artist and freelance writer. She lives in Saco with her husband and two children (a.k.a. her favorite people).

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