Mission accomplished, thank you Mike and Gale for the vehicle, equipment, financial and emotional support. The trip to Big Sky was the the perfect remedy for the whole family after Barb and Kate being at Mayo Clinic for a week and half.
Being in Big Sky for the weekend, removed from all the trappings of home, surrounded instead by family, friends and the beauty of the Rocky Mountains. We focused our energy on Paetra and Isabelle with the help of the ski team community. The hurt and fear they experienced from Kate and Barb being away faded into the fabric of the weekend. The interweaving of races and family meals created a shared set of goals that brought us back together in a rapid and concise way.
Twelve hours together in a car over three days was a bit much, but it worked. The further we got from home the problems and concerns Paetra and Isabelle had built up faded. Getting out of the familiar environment and breaking the routine of home accelerated their ability to let go of what they had built up inside.
Paetra and Isabelle were forced to leave behind the feelings of sadness and neglect from the weeks prior. The races gave us an opportunity to put them back on center stage, within the context of their friends, and an activity they love.
The weekend felt like it was tailor made for our benefit, the distance from home, the hyper focused setting of the kids races and the community support for Kate made it feel like a three day therapy intervention.
New helmets, boots, speed suites and legitimate race skis gave the big girls a sense of purpose. They embraced the gear and the opportunity to apply what they have learned from their coaches to achieve a new standard of personal performance.
Paetra rose to the challenge on her final slalom run of the weekend, laying down a time that was faster than all but two of the girls in her U12 group. It is notable that she is the youngest and possibly lightest athlete in the group. Lighter than the top girl by 50 to 60 pounds, significant in a gravity sport. Her final run was benefitted by several pep talks from different parents and coaches that took her aside to work on letting go and having fun while she raced. She knew she could ski faster than she had in her first three runs but needed help finding her way. A small but significant personal measure of success was recorded when her final time was faster than her younger sisters. This fact was more significant than beating the majority of the girls in her age group.
Isabelle has become the standard for success, winning all four of her races this weekend by 4 to 5 seconds each while recording times that would put her on the podium in the the next two older age groups.
Isabelle is fiercely competitive, vigilant with details and race preparation. These traits combined with proper gear set her apart from her competition all weekend. Bayard predicted this outcome last year after she did one race on good skis. I was guardedly proud of how she competed and delivered the beat down, but most proud of how she behaved in the limelight, exhibiting respect and humility beyond her years.
Barb was a superstar all weekend. After an exhaustive week and half living in the epilepsy ward of the Mayo Clinic, watching Kate go through hell, Barb jumped back into family life. Providing love and support for us all with no hesitation from fatigue or depression.
The regiment of Kate’s testing last week was terribly difficult on both of them. The need to record her seizure activity using 24 hour EEG and video monitoring was trying. Kate was not allowed to leave the bed where the video was recording for five days. Add to that, an abrupt 50% reduction of her anti seizure medication. Barb had to watch helplessly as Kate experienced a sequence of seizures each night that grew in frequency to around fifty in an eight hour period. Understanding the importance of these tests only gets you so far… the gap between intellectual understanding and the ability to handle it emotionally is vast.
The EEG results will be the foundation for a surgical recommendation from a team of advisors at the Mayo Clinic. We are living in an odd space for the next week while we wait for the committees review and recommendation. Knowing the implication for the result of the tests but not having the formal conversation about scheduling a surgery or seeking a second opinion…we are in a zone of suspended reality. Not having to face our fears of the surgery and the risks it brings but knowing full well this is the likely path.
More now than ever, I hold Kate a little closer, hug her a little longer, look into her eyes as she speaks with me. I want to hear her and see her with a lasting clarity as she is today, full of wit and humor, a vibrant engaged 5 year old. I am irrationally frightened by what waits on the other side of the phone call with the team at Mayo this Thursday. Knowing intellectually what is best for the “future Kate” I struggle with the potential impact for the surgical path we are on. There is an unsettling permanence to the procedure without the guarantee of a successful outcome.
Kate’s life will be radically changed, in several ways, some hopeful some concerning. The best outcome provides a vision of life without seizures and a bright developmental future where Kate is allowed to grow and thrive unimpeded by intractable seizure and sleep deprivation.
