The Kartoffel has a rare brain malformation called pachygyria. In a nutshell, her brain doesn’t have as many squiggly lines and grooves as yours or mine, which is a bummer because those bumps and grooves (called sulci and gyri) are what help us to do many things like walking, talking, deciding to listen to Donald Fagan’s The Nightfly, and to some extent even eating and breathing.
We originally sought out medical help for something else. The Kartoffel was having these jerking movements that we later found out are called Infantile Spasms (IS); an uncommon-to-rare form of epilepsy that shows up in children usually between 3 to 8 months. IS itself is typically just a symptom of some underlying cause and in our case that cause was pachygyria. She was put on medication for the spasms but will most likely have some form of epilepsy her whole life.
A question we hear a lot is, “When will it go away?” Barring some miracle, she will never ‘grow out’ of her pachybrain. It is not a condition to be grown out of but that doesn’t mean she can’t grow. The goal is not to get her brain working like most of ours do but rather to find the best way to use the brain she has. One way to do this is by providing the Kartoffel with a stimulating environment, an environment that will workout her brain.
We love reading, singing, going for walks, and other things that engage her senses and give her brain the best fighting chance to grow. Doing so also helps us to be in the present moment. With a condition such as hers, it can be very easy to get lost in feeling grief over the future you thought you had. Mourning your loss is important, and yet it is just as important that you return to the life you have and to live it. Constantly narrating your life and what is going on around you is a great way to be present and truly appreciate the time you do have together.
This place is a way for us to extend that narration to all of you. Our little Kartoffel is so much more than simply the sum of her parts. We hope to share the joy and meaning she has brought to the lives of those she has met.
Feel free to come along for the journey, share a few memories of your own, and maybe make a few new ones while you’re here!
Cheers.
Our Little Kartoffel 