Thank you for visiting!

Thank you for visiting!

Saturday, December 4, 2010

We did it!

Just a quickie tonight to catch you up. Time to breathe a sigh of relief -- Matt and I made it through Thanksgiving with the family AND my Dad's birthday party without us having to turn right around and drive the 650 miles back home!

We even have the pictures to prove it :o)  Thank you, MaryO, for the great photographs!

How did we do it, you ask? The key seemed to be finding a quiet room where Matt could work or play on his computer relatively undisturbed. Thus ensconced in a corner of Dad's guest room, Matt managed to keep himself mostly awake and upright on Thanksgiving AND (drum roll please) was able to emerge from the hermitage long enough to enjoy a lovely Thanksgiving with the family. Both our girls and their families, our son Joseph and my Dad, all around one dinner table for the first time in years.

Matt had moments of cataplectic muscle weakness (especially when the little ones were doing something especially cute at the table) but no full-blown attack to prevent him from joining in conversation and noshing with the rest of us.

Wow -- we were kinda like a normal family there for a bit. And we did it all over again on Saturday for Dad's birthday. Well, kind of. On Saturday Matt stayed in the guest room pretty much the entire party. Even with the isolation he had some serious attacks, probably triggered by all the noisy festivity going on outside his room. During the course of the day, Dad held court in the living room as 50 or so friends and family came by to eat, drink, and be merry.

Meanwhile, Matt granted an audience to those brave enough to enter the guest room to say "hi".

We debriefed a bit about the trip on our drive home, and agreed it worked out pretty well for both of us this time. Perhaps we are finally finding the boundaries that will allow Matt to spend some time with family but avoid triggering debilitating attacks of cataplexy?

Perhaps we just got lucky?

Hard to say without more data, but I choose hope: I think we are finally figuring it out :o)

By the way -- sorry for the radio silence. I am actually working a lot right now and loving it (though I'll love it even more when we can afford to pay me for more of the hours I work). Check it out though -- we have a website:  My job title is "Director of Research" but at the moment I am doing quite a bit of everything: research, direct service, education. No two days are the same so it keeps things interesting. It's about time I added a bit of "good" interesting to our lives!



  1. I am so glad you found a solution that allows you to enjoy your family, and Matt to have limited visiting also. Time with family is always precious, but even sweeter if you have to fight and plan so hard for it.
    We just enjoyed a lovely evening playing a board game (Settlers of Catan), and our PWN,( Ben), was having Small attacks ofcataplexy the whole night. I certainly hope he enjoyed the evening as much as we enjoyed having him with us. When he had to go sleep, we just took over his turn and tried to play it as he would want it.

  2. Wow. Trish! I haven't talked to you via email since my surgery, but I by accident ran across the ABC special about you guys. No connection until tonight, but when it was made... you are an amazing person. I just wanted to tell you that.


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