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Chuck Swenson

Dav, thank you for sharing your concern and your pain. The situation must be particularly hard on Eva and her family. How is she coping with the daily trauma?

Dav

Taking care of Kai is basically a 24/7 job now, so Eva and her mom's lives have become difficult. I suppose they are holding up well given the circumstances, but I wouldn't wish this sort of grief on my worst enemy. To make things worse, Eva and her mom are Austrian. Eva is here on a student visa, finishing up her PhD at Stanford. Eva's mom's tourist visa runs out this week, she will have to go back to Austria for at least one week. Eva and Kai might go back with her, if not I plan on going down as often as I can to help her while her mother is gone.

Paul

Dav, really sorry to hear that too. brought tears to my eyes too and all I can do is just hope that he ll get a little better soon. Hope you manage smth with the walker. good luck. send my support to Eva and her mum.

anselm

sad. there must be something that can be done to help this little guy? it is terrible that we know so little about the chemistry of the mind.

best wishes; my heart goes out to kai.

Dav

Andy,

There's not much hope for a true recovery, now we're just hoping they can find a way to control the seizures and/or prevent him from being so mentally deficient as to be completely reliant on others to survive.

Yes, it is a shame that neurological disorders are so little understood, but I doubt we'll make the same sort of progress in that area that we've grown accustomed to in technology fields. At least not any time soon enough to help Kai's life probably.

jackie

My daughter was diagnosed with Lennox-Gastaut syndrome years ago. She is now 27 and currently is having an increase in seizures. But she's already improving, and I expect to work through this and bring them back down to a manageable level. I have learned to be as tenacious as a bulldog. I never EVER give up or give in. I guess I never will because when it seems like I hit a brick wall, I always manage to think of that next thing to do. I have only a few basic rules that I try to remember in my approach to caring for my daughter, and one of them is that I do whatever it takes to keep her safe.

I was struck by the sadness of your post and feel compelled to share a bit of what I've gone through. It IS sad. There's no denying that. It's sort of like you are losing something that you never had -- an ideal image of a child you could drench in love and learning and all of the best that life, art and nature has to offer.

Instead, all the rules of communication, sharing, learing and love-giving have changed. And there is absolutely no handbook to guide you through the experience. So... you write your own handbook. You learn lessons every day, and sometimes it takes years of brutally hard work and times before you realize that you have learned some of the most profound lessons possible... lessons that only a tiny handful of individuals are priveledged to learn.

But the lessons come from hundreds of sleep-deprived nights and nerves on edge. And then one day you realize that your desire for him to live up to that former ideal has been replaced by something else. Acceptance of the situation will have grown on you over time like a fine patina. And when it's there, it stays and glows and protects you.

My daughter is a constant source of delight, terror, aggravation, admiration, sorrow, laughter, amazement, comfort, exasperation, inspriation and much more.

She weaves our family together and makes us laugh more than anything in the world. We have more funny stories than you could imagine.

Her capacity for love and acceptance is unlimited and she showers us with it unabashedly. She is a study in contrasts, yet is as predictable as the moon. She ignores us when it pleases her and wants attention as soon as it's inconvenient.

If I could go back and change whatever it was that turned my daughter into the person she is today, would I? I have to say no. I would not. Her impact on our family and so many others has resulted in such ripple effects of good that I would be fearful to take that away from the world. And, I would definitely laugh less.

Take heart. Your child is love personified and he will give you wonderful opportunities to be a person who loves unconditionally.

If you follow another rule of mine: laugh and live in the moment, he will take you on a journey you cannot imagine.

jackie

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