The end of summer is upon us; Nora and her brother will be starting school this week, with Nora entering the third grade.
It’s been a good summer. Nora has been healthy and happy, enjoying countless hours listening to audiobooks and setting up playdates with friends. Last April we quietly celebrated four years of seizure freedom, and about two years on a reduced version of the ketogenic diet. For the last year and a half or so we’ve been estimating Nora’s portions, focusing more on limiting carbs and matching carbs with fat and protein in proportions roughly equal by volume. For example, if Nora wants some fruit, we ask her to eat an approximately equal amount of cheese or nuts (she usually prefers cheese.) Ideally we’d be at something like a 1:1 ratio, which would be close to a MAD diet, but I think many days it is probably less than that and something more like a low glycemic-index diet.
We’ve felt more comfortable traveling. We took the train back to North Dakota — a nearly 30 hour ride — to visit family this summer and had no trouble feeding Nora with a combination of carefully selected retail food or foods we brought with us.
For a fun treat we’ve recently found the “Coconut Bliss” brand of ice cream, which is around a 1:1 ratio. Nora loves it, and I admit I feel a great delight in allowing her to enjoy an off the shelf ice cream product without much restriction. It has 17g of net carbs per serving, which would have been much too high to fuss with back when Nora was restricted to 10 g of carbs per day, but now I feel comfortable with her having it due to the 19 g of fat that goes with it. (As an added bonus, it’s made nearby by a Eugene, OR company.)
Nora has grown tall and strong, with absolutely no signs of any growth delay she may have had while on the carb and protein restrictions. As I type this, she is swinging and climbing in a small tree in our backyard, like the primate she is.
Cognitively Nora is sharp and very strong with language; she has a very large vocabulary and greatly enjoys mystery books and theater. She speaks well and reads well. She’s a natural organizer.
She does struggle with certain abstract concepts, such as music notation, analog clock reading, and mathematical procedures. Of course these are not unusual struggles for any kid, but I would say Nora seems to struggle just a little more than average — whatever that may be — with these sort of abstractions. I wonder sometimes if these minor struggles are related in any way to any cognitive delay that would have been related to the epilepsy, as myoclonic epilepsies are usually correlated with cognitive delays or regressions. But I feel there’s really not much evidence of that; it’s quite likely that Nora is just a very normal kid with some strengths and some areas to improve. Watching her develop I’ve never lost the gratitude that she is doing so well. I will never take her health for granted.
It was about one year ago I wrote a post about Caring for the Caretakers. Nora’s epilepsy really took off in the fall of 2011, so I think I associate the fall with those difficult times. This fall I find myself thinking of it again, about our journey and also about those that are still struggling or will soon be sent tumbling down that path. So again we want to remind our fellow parents and families that you are not alone. Epilepsy can be so difficult, and scary, and unfair. It is OK to acknowledge how hard it is, how scary, how unsettling, how frustrating, how limiting. When we are hurting, we must take some time to acknowledge our pain, and also to have our community and supporters acknowledge the pain.
To all the parents and caretakers and families out there, I say: I am so sorry this has happened. I am so sorry this unfair and scary thing has set upon someone you love. I am sorry it hurts. Cry and rage if you need to; give yourself space to acknowledge the hurt.
When you’ve had time to be with your pain, pick yourself up and put one foot in front of the other. Keep going. Each difficult day you make it through is one less you’ll have to deal with. If you are in the midst of a miserable time, remember that it will not last forever, there is a better day out there in your future, for you and your child.
We are here to help. Please leave a comment if you need an encouraging word, or a space to vent. No one is alone in this.