So guys… After a terrifying day of drop seizures last week, we went in for a new EEG for Ben and got the clarity (for better or worse) we had been hoping for. Ben was diagnosed with a rare form of epilepsy called MAE or Doose. This type of epilepsy can be difficult to treat, but we are hopeful.
We started him on medication over the weekend, something we had resisted all this time because of the seriousness of the side effects. His seizures are particularly stressful because they are drop seizures and thrust his body to the floor, usually hitting his head. We have been really lucky so far; he has only been outside once when he fell, and gotten one bloody nose. But of course the risk of serious injury is high and we have to watch him closely. (I have been hovering over him for a year now and it’s done a number on my nervous system.)
Our greatest hope is that the medication will stop the seizures, that the side effects will be minimal/manageable and he will be able to resume normal kid-like activities. I know it’s going to break our hearts to tell him he can’t do jungle gym, monkey bars, bicycling, etc. (things he LOVES, ugh) until he is seizure free for a while and his EEG looks different. Our next hope is that he will grow out of it and it won’t be a lifelong illness.
I’m trying really hard to trust this, to trust all of it. You know how years later you can look back and see how all the pieces fit together? even the hard ones? How nothing is wasted, how it all makes sense later and it’s futile to resist it… In fact, when you’ve done everything you possibly can, it’s best to surrender to it, even when it sucks.
There is a way that parenthood grows your capacity to hold so much more than you ever thought you could. My capacity to hold chaos, fear, joy and uncertainty is so much bigger and deeper than ever. And at best, I feel stronger and more hearty somehow, like this new dimension to our life is calling on us to be even better versions of ourselves. Even in the midst of uncertainty I can see one thing clearly: That this is all part of Ben’s story. And it will be a wonderful story because he is a truly magical boy. And I know he is held by something big and divine.
We are digesting this new information slowly and would appreciate any encouraging and loving thoughts you might want to send our way. If you have hopeful stories (only happy ones please!) we welcome those too.