If I had to do it again …

I was having a conversation with another Keto parent the other day that spurred an interesting question for me: if I had to re-live the most difficult parts of Nora’s epilepsy, what would I do differently? What have I learned that I would tell my past self if I could?

Float like a butterfly. Have you ever watched how a butterfly flies? They flap furiously, then glide for a short time, then flap again, then glide. They don’t try to keep an even pace. I think that when I was really in the weeds with my stress about Nora’s epilepsy, I felt like I had to “handle” it with grace, that I should be calm and in control. But then when I couldn’t handle it, I felt even worse because I knew I was failing.

In retrospect, I would allow myself more ups and down. I would find people that could listen or validate my fears and anxiety, to allow me to acknowledge my hard feelings so that the “down” phase could allow me to rest and vent. Then I would lean in harder on pursuing things that give me joy and space, so that I had an “up” phase, to pick me up so that I was ready to head back into battle against the anxiety and day-to-day grind.

So perhaps don’t focus on trying to be bulletproof and always on top of everything. The grind will eventually wear you down, no matter how strong you think you are. Instead focus on having strong means of renewal, so that you can keep diving back in. Think of what gives you joy and peace, and lean on those things more than ever so that you can be rested for the hard work. Flap and glide, flap and glide,…

Mediate and breathe. Meditation and breathing exercises don’t need to be fancy. All you have to do is take a moment to interrupt your rumination to give yourself a little break. I was describing this visualization to my therapist the other day: have you ever watched a vortex form at the drain of a bathtub? It starts weakly, then extends down from the surface down to the drain as it builds. But sometimes when the vortex is still just forming, a drop of water from the faucet will fall and interrupt the vortex formation, and it slowly has to start building again. I think of that vortex as my swirling, busy thoughts, and I visualize that drop of water splashing into the vortex, rippling out, and stopping it. I think if we regularly check in with our brains and interrupt these swirling thoughts throughout the day, we can give ourself a little break, and keep from exhausting ourselves. Visualize that drop of water sending a calm ripple across the water of your mind, leaving stillness in its wake.

Be vulnerable but resilient at the same time. This relates quite a bit to the “float like a butterfly” idea, but if I had to do it again, I would be better about telling myself things like: “I know I will get through this, that there is a light at the end of the tunnel, but today has been really hard, and I’m struggling.” It is possible to feel hopeful while simultaneously expressing grief, and it is possible to acknowledge your fears and frustrations while knowing that you eventually make it through. You can live in both places at the same time.

Epilepsy is really hard. Keep going; one foot in front of the other. Each hard day you make it through is one less on your path. Embrace your sources of joy, keep filling your tank, and keep diving back in.

Nora is 11!

Nora turned 11 in June, which is a lucky birthday because it is her favorite number and the year that witches and wizards get their admissions letter for Hogwarts…still waiting on that! There are many books focused on 11 year olds, so it must be an important transition year in a person’s life. As a future author, Nora pays attention to these things. 11 should be a great year!

Nora is now over 7 years seizure free. Her last seizure was in April 2012. We held steady at a 3.5:1 ratio for 2 years after that, started weaning her from the diet in April 2014, then kept her on MAD until she was about 5 years seizure free. You can see the general progression in Nora’s Epilepsy Story. Now she eats like any other kid, making herself mac-and-cheese and snacking on ice cream. We still try to steer her away from sugar bombs (marshmallows, suckers, etc.) and toward sweets with some fat (chocolate!). She still prefers half-n-half on her breakfast cereal rather than milk, go figure. Now we stress that the most important thing is to keep up a health balanced diet.

One concern that I had about the diet was creating control issues with food. There are 2 ways to worry: first, that she would go wild after she was “off” the diet, or second, that she would be super controlling over food into her future and develop an eating disorder. I am happy to say that I don’t see any of those dynamics playing out.

Nora has amazing self control when it comes to snacks and sweets. On the diet, both she and her brother would use strategies to enjoy a small portion of a treat, like putting ice cream into a small bowl and using a tiny spoon to eat it a bit at a time to really enjoy it. She would eat a square of chocolate so slowly that she would get a very characteristic chocolate streak in the corner of her mouth. She usually still has Halloween candy in her room 6 months later. When we were at the Oregon coast last week, each kid got a bag of 10 saltwater taffy, and Nora still had some in her bag when we got home. She has definitely not gone hog wild, and she does not deny herself treats. One reason that the diet went smoothly was her amazing self control, even when she was so young. We all negotiate our relationship to food throughout our lives, but for now Nora seems to have it down.

Nora has grown so much lately, she is getting tall and is still lean. Next year she will go to middle school, continuing with the dual-immersion program with her Spanish language arts class. She still enjoys theater, deepening her writing and directing interests. She recently created an adaptation of the original Alice in Wonderland story. The “readers theater” version that she performed for us was about 20 minutes (perfect), and she has recruited several friends to play the parts while she directs. They set a performance date in September, and based on the sustained interest among her and her friends, I think it will actually happen! Nora continues to amaze and delight us. We are so thankful for her beautiful healthy brain.