Last week, we were inpatient at the Children’s Hospital of Philadelphia transitioning on to the ketogenic diet. If you’ve never heard of it, the keto diet (as those of us that are “in the know” call it) is a high fat, low carb diet that has shown to have benefits for kids with difficult epilepsies. The diet was codified in the 20’s, but it’s basically based on all those accounts of fasting doing amazing things for people thousands of years ago, including those stories in the Bible. Fasting causes your body to burn fat. When your body uses fat for energy, it produces ketones in the blood. Those ketones making it to the brain helps with seizures for some people. The diet basically mimics the fasting process by giving the body only enough carbs and protein as it needs to develop but otherwise giving the body only fat to burn for energy, producing ketones.
Different hospitals have different protocols for getting people on the diet, but CHOP does a week of inpatient training to make sure the parents are ready to support their child on the diet. It’s a lot of measuring, a lot of math, some cooking, and all geared towards making the diet as successful as possible.
This slideshow covers our week of admission. Learning to draw blood, cooking in the kitchen, meeting an Ultimate Frisbee Team and a professional NFL player. Bone scans, hair nets, IVs and food. It was a lot to process, and even writing this post took days after admission to craft.
The diet doesn’t work for everyone. For those it does work for, some people have claimed a benefit during admission, others showed progress weeks or months after admission. However long it takes and whatever we need to do, we’re going to do everything we can to.
There is a common pattern in stories from two thousand years ago in Greek mythology and more recent stories like Star Wars and Superman. It’s often called “The Hero’s Journey” or the “monomyth”, popularized by Joseph Campbell in his book The Hero with a Thousand Faces.
In a monomyth, the hero begins in the ordinary world, and receives a call to enter an unknown world of strange powers and events. The hero who accepts the call to enter this strange world must face tasks and trials, either alone or with assistance. In the most intense versions of the narrative, the hero must survive a severe challenge, often with help. If the hero survives, he may achieve a great gift or “boon.” The hero must then decide whether to return to the ordinary world with this boon. If the hero does decide to return, he or she often faces challenges on the return journey. If the hero returns successfully, the boon or gift may be used to improve the world. ~Wikipedia
This is my hero.
He’s on his own journey. His ordinary world was back in Colorado, where he lived a relatively stress free, normal life. His call to adventure came from our opportunity to move to Philadelphia where he would have to enter a strange world to make new friends and face the other trials that normally come along with moving to a new city. His severe challenge now is the epilepsy that has altered his life so much in such a short time.
In the monomyth, the hero may get help on his journey, and my son’s journey is no different. We are grateful to have the help and prayers of our friends, our family, and of the doctors, nurses, therapists, and everyone else that is giving of themselves to help my hero face his challenge.
My hero is very much in the middle of his journey, but I know that my hero will return successfully from it, and I have no doubt that he will also find a way to improve the ordinary world, just like he improves mine.
I was cleaning up my photo album on my iPhone when I came across this picture.
This is the last picture that I took of my son before he had his first seizure. We were on an exploratory trip to Philadelphia ahead of our move here, and my son and my wife had spent the day looking at houses. To reward him for his patience, we took our son to Dave & Busters for dinner.
Looking back on that night, I think I saw him space out a few times, but I chalked it up to being exhausted from the day’s activities. Seizures weren’t a part of my vocabulary yet. So we finished our dinner and turned in our tickets for prizes, and we walked down the stairs towards the exit without any inkling of what was about to come.
Six months later, I look at other pictures of him that I took before epilepsy when life was simpler and my heart breaks for that boy in those pictures because of what he will eventually go through and be living with. That boy that never had a seizure. That boy that never needed an anti-epileptic. That boy that was never too tired to go to school. That boy that never threw a punch or spit at his parents. That boy that never hid under a chair and cried because he didn’t understand what was happening to his body. That boy that never had to feel like he was any different than any other boy.
As much as I wish my son didn’t have to go through any of this, I never wish that I could have that boy back from the pictures. This is my boy. This beautiful, strong, smart, energetic, epileptic, courageous, compassionate, empathetic boy is my son. His epilepsy is a part of him and it has changed many aspects of our life, but it could never change how much I love him.
Nothing will ever change that.