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Thursday, July 1, 2010

Learning (at least I hope I learned something) the hard way...

Hi folks, I'm sorry for the delay between posts. Life has been a bit more difficult than usual of late, and I have soooo wanted my next post to be more uplifting than previous ones. I've been waiting for an improvement so that I could approach you from a more positive space, but that ol' rainbow is still  hiding behind the grey clouds.

You may recall that a while back I had the "bright" idea that Matt and I should take a car trip together to see family in California. Miss Riley was getting ready for her first ballet recital and Belle had a soccer game scheduled.

This past weekend we took this trip. I found the ballet absolutely wonderful, Matt: not so much. The soccer game was loads of fun too (for me) although soccer matches between a bunch of 3 year-olds appear to have a lot in common with herding kittens. Stay tuned for more (with pictures!) in a future post.

Back to Trish's folly:

Hmmm, first clue that I had been seriously deluding myself to hope that this would be a a lovely opportunity to enjoy family activities with my husband? -- Within minutes of our arrival in Sacramento, Matt had his first of many, many, significant and debilitating attacks of cataplexy.

For goodness' sake: what was I thinking? Seriously -- what was I thinking?

know that family time triggers his cataplexy. I know that strong positive emotions do the same. And yes, I am painfully aware that Matt will have an attack if I simply describe to him some cute thing one of the little ones has done.

And yet, I dragged him 600 miles to attend a pair of activities. both of which featured cute kids having fun. Activities absolutely certain to provoke an attack. Or, as it so happened, a series of attacks.

I don't know how to explain my total disregard for our reality when planning this trip. Here are a couple of theories:

  1. I really hate seeing Matt miss out on the fun kid stuff and so... I "convinced myself" that the enjoyment he would experience would outweigh the discomfort of the attacks he would have.
  2. I desperately wanted to share these experiences with the man whom I love most in this world and... I convinced myself that the enjoyment Matt would experience would outweigh the discomfort of the attacks he would have.
Whatever the reason(s), here is how the weekend unfolded:

We arrived in Sacramento late Friday night. Matt had his first attack. The kids arrived at the house a couple of hours later; Matt had his second attack (so we turned in for the night).
Saturday a.m. Matt sequestered himself in a bedroom until it was time to leave for the soccer game.
We arrived at Belle's soccer game. Matt managed to walk to the field, then had an attack which lasted for the duration of the game, not abating until all of the little ones had dispersed to go home. (The new profile picture is of Matt at the soccer game.)
We headed back to the house for lunch. Matt hid out in the bedroom again until it was time to leave for the ballet recital.
Within 5 minutes of our taking our seats at the recital, Matt had an attack. The cataplexy lasted through the first act and intermission. When Matt was finally able to open his eyes and to move, he stumbled out of the theater and then headed back to the house.
At the house, Matt once again disappeared into the bedroom, suffering another attack which kept him from attending the post-recital BBQ.
Saturday evening Matt informed me that he needed to go home as soon as possible.
We had been in Sacramento for less than 24 hours.
Sunday a.m.: we climb back into the car to begin the 600+ mile drive home.

For goodness' sake: what was I thinking? Seriously -- what was I thinking?

I hate this disease.

I hate the fact that unless and until new ways of treating it are discovered, Matt and I won't be able to share a ballet recital, soccer game or birthday party without Matt becoming extremely ill.

I hate that I will have to do all of these things without my partner.

I hate the fact that this disease robs Matt of the joy of these occasions.

I love my husband but I hate his disease.

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