Happy Birthday, Sweet 16

 

"And she never gave up."  It's what her shirt says.  

This girl,  Awesome, it’s her Sweet 16 today (during the Covid pandemic).   

She is Smart. Talented. Kind.  Social.  Friendly.  Loyal.  Loving.  She marches to her own drum, joyfully and self-confidently.  She is strong and brave.  She is a fierce warrior who has faced and endured more in her 16 years than most people who are twice or three times her age.      

She said her first words at 6 months, was talking in sentences at 1 year, and was reading well and already a serious bookworm by the time she was 4 years old.  She started violin at 4 years old.  She made her own stop motion film at 5 years old and submitted it to a film festival.  She was a world traveler; she traveled to South Korea with us at 5 years old, to Europe and Canada at 6 years old.  She was writing daily installments of a fictional story by 8 years old—and had a following of more than 400 people eagerly reading her stories.  She danced for several years performing with a group around the city; she sang in a church choir; she played violin solos in church; she acted and performed in a local children’s theater group for several years; she took art lessons; she swam on swim team; she had a best friend; she was part of a writing group; a book discussion group; and had several groups of friends.  She is a natural leader to whom people gravitate, in part because she’s kind and inclusive, but also because she’s self-confident, bubbly, and fun to be around.   

Epilepsy has taken so many of these things from her and severely isolated her.  It has taken her freedoms; while her peers have been becoming more and more independent these past few years, she has had to endure—for medical reasons (we are under strict orders)--a level of supervision more like that of a toddler.  She can’t be out of our sight for more than five minutes at a time, least we miss the start of a potentially life-threatening seizure. 

Epilepsy interrupted her attention and processing—so essential to learning—literally every couple of minutes all day every day for six years, making learning slower and harder for her.  What she had done completely effortlessly, now required a lot of effort and exhausted her.  Getting through a school day was often more than she could handle.  Despite this, she continued and continues to learn well; she amazes her doctors with her ability to not only keep up with her peers, but even outpaced them in her gains (as shown in tests) over the last couple of years.  All this with a huge seizure burden that would leave most kids struggling and falling further and further behind. 

She’s endured medication trials that left her nauseated for months on end, altered her ability to control her actions and emotions, covered her in feverish rashes, and left her exhausted and lacking in resilience.  We’ve made more 911 calls on her behalf, and she’s had more ambulance transports than we care to remember.  Over the years she’s spent more than 50 days in hospitals.  Endured severe aspiration pneumonia as the result of a seizure, losing half a lung in the bargain.  Dealt with weeks and weeks of video EEG monitoring on the Epilepsy Monitoring Unit in which her every word and action was watched every minute of every day.  She endured a week of SEEG monitoring with electrodes implanted directly in her brain through holes in her skull.  She’s endured tests of every kind (MRI’s, fMRI’s, TMS, PET’s, MEG, SPECT’s, etc. etc. etc); her case has been considered by groups of the best and brightest doctors and medical professionals in the country (3 hospitals in 3 different regions of the US); and she’s endured two brain surgeries, knowing going in that she might come out missing some essential part of herself (thankfully that didn’t happen).  She’s been part of a dozen medical studies.  And she’s a Make-a-Wish kid (except that she can’t have her wish until after the pandemic is over, so even that has come with challenges for patience).

This girl has absorbed all those losses, tests, monitoring, hospitalizations, and difficulties with more grace than most of us will ever show or know.  She’s faced the unknowns and threats of epilepsy and status seizures; and the unknowns of brain surgeries with bravery and grace.  And she continues to endure the unknowns of the future with bravery.  A lesser and/or different person would not only have been miserable, but also would have been miserable to be around in these circumstances.  But she is a joy.  And full of joy. She pulls closer through it all instead of pushing away.  She doesn’t lash out.  She’s a loving person who has absorbed much suffering with such grace.    She quietly endures.  And she endures with a smile on her face.    

I would never have wished all this on our sweet daughter—or indeed anyone. But in moments of contemplation, when we say how we wish she’d never had to suffer all these things, she says she would not have wanted to not have had epilepsy as all that she’s been through has shaped and made her into the person she is—and she is happy with that person (though she does say she’d be glad to see epilepsy go away permanently at this point, as she has no desire to continue to suffer more from epilepsy if it is possible).

I am in awe of this girl on her Sweet 16 birthday.  "And she never gave up."  It's what her shirt says.  But she's done more than that.  She's endured with grace and graciousness all that life has thrown at her in her first 16 years of life.  And she's still hanging in there. 

Please join me in wishing this Awesome girl a happy birthday!  And in praying that her doctors are able to find treatments that work to free her from seizures.  May she have a long, productive seizure-free life! And find her God-given work.  And her God-given place in the world.  And may she always be strong, and brave, and kind, and always continue to be the awesome Awesome she is!