April 24 2017 marked Nora’s 5 year seizure free anniversary. We didn’t celebrate. Just a little high-five and the knowledge that life goes on, more challenges lay ahead, and an appreciation for moments of simple happiness.
Nora’s period of seizures lasted only about 18 months total. From a few tonic-clonics in the fall of 2010 to a horrendous period of myoclonics in the fall of 2011 to eventually getting her seizure free in the spring of 2012. I estimate she had something like 10 tonic clonic seizures, but she had at least 1,000 myoclonics, and probably several thousand more that we didn’t document.
On one hand 18 months doesn’t sound long, but anyone that lives with epilepsy knows it brings life to a crawl. You are always on guard, always waiting for the next seizure to come out of the blue sky. The fall of 2011 felt like a lifetime to me.
Nora doesn’t really remember any of it. She asks what the seizures were like. She knows that her diet and a period of seizures are part of her identity, but she does not remember.
I can see now that we have been unlucky and lucky. Nora was unlucky to have to deal with seizures. She was unlucky to have epilepsy. Unlucky to have a nasty epilepsy. Unlucky to have a refractory epilepsy.
But we were lucky that the ketogenic diet worked so well. We were lucky to pull her back from the edge. We were lucky to have the dedication and resources to apply the diet strictly and completely.
My heart breaks for people still looking for answers; still looking for their good luck after the bad luck. Please hang in there. Please keep going. Things will get better.
Nora is doing well. She is a very normal kid. She attends a dual language school (English/Spanish). She likes math when phrased as silly word problems I challenge her with when we hang clothes together, but can get frustrated with the notation and worksheets at school. She has many good friends. She loves to dance and perform. She has very good pitch when singing, even though she hasn’t had any voice training. She plays piano, reluctantly. She listens to countless audio books. She has grown tall and lean and — surprising to us — recently shown running aptitude: she has a runner’s gait.
Her diet is still restricted, but only a little. Our only remaining rules are that she not have any refined sugar (no soda, no candy), limited bread, and that any fruit be balanced with a roughly equal amount of cheese or nuts (by volume).
We’ve actually gone out for gelato a few times this summer. When I first had the idea for it a few weeks ago, I checked with Christy to see if she felt comfortable with it. When we agreed, I suggested it to both kids. Nora was ambivalent, and responded with “but we’re out of my ice cream,” referring to the coconut ice cream she was anticipating that we would bring with for her to have while everyone else had gelato. I told her “no, you get gelato too.” Those little moments are nice. She licked her bowl clean.
She’s waited patiently for five years.
(A few days later one evening she suggested with as much casual indifference she could manage “Maybe we can go downtown and have dinner and then have gelato. If you want.”)
I will always be grateful for how Nora has embraced the diet’s role in her health. She is so responsible and so thoughtful about it. To our credit I think we have always been very open with Nora about the benefits and challenges of the diet, so that we can sympathize with her when she is frustrated, and celebrate with her when she gets to exchange Halloween candy for toys.
Practically speaking, Nora still has the same breakfasts and lunches as she has for years. Breakfast is our special granola (Nora’s MAD About Granola) with half and half. Lunch is Mission low-carb tortilla roll-ups with turkey and cream cheese, some nuts or cheese, and some fruit. Dinner is very often Mission tortilla quesadillas with cheddar cheese and avocado and carrots. Her main treat is Coconut Bliss chocolate bars and Coconut Secret coconut bars.
For now, I am thankful for these routines, and this quiet anniversary.
(P.S. As I write this, Nora and Anders are on the trampoline. It’s 9:00 PM on a dusky warm spring night. Anders is explaining to Nora how evolution works, and using Nora’s epilepsy as an example of mutations.)