We did it! We left all five kids for the first time since Ava was born. Sure we have taken little "in town overnighters", but this was a full three days with just me and the fella. I forgot how fun it was to know that you have that much time to spend together, to know if you stay up too late, it entirely up to you when to pull that body out of bed. I loved being the recipient of open doors, a husband who sat beside and read while I slept in, endless conversation with the person I love most. It was nice to be reminded how good this man is at taking care of me. Not that he is not at home, but let's be honest there are 6 other people who are usually louder, definitely cry more, and have a lot more needs.
Sounds like an anniversary, right? Not even close. We attended our first PXE conference. PXE is the ABCC6 gene that runs awry in our family. Thanks to the marriage of two people who just loved each other and forgot to check out the genes. (thankfully, so) This was incredibly hard and wonderful all at the same time. I won't write to much here, except to say that I am so grateful we are here at the same instead of 20 years. This is some tough stuff, but I believe we have great reason to hope at least for treatment. I am amazed at people who can give up their lives for the sake of some many others, and have come away with such great gratitude for 1. people who are selfless and brilliantly (the founders are exactly like the parents in Lorenzo's Oil) and 2. modern medicine and the wonders of science and those who understand it. (i don't, but my brilliant, scientific husband does. Man am I glad for those bazillion years of medical school!
2 comments:
I LOVE DC. I miss it a ton! There is so much to do there. I hope you had a great time and got some good info. on PXE. How is Paris doing? When is your marathon? You went to a lot of places in a short amount of time. Looks like fun. :)
Look at those crystal clear pictures! Love them! I'm so glad you're doing all that photo stuff, but even more glad that you got to go to DC. We lived there for six years before we moved here. I miss it so much. My three oldest kids were born there, and I want to take them back to see it all so bad. Anyway, It looks like you guys had so much fun. LOVE get-aways, even if it's for things other than pure pleasure.
It was so fun to see you here! Next time you come you need to bring all your kids and we need to have Lisa throw a big party (because she's so good at that), and we need to all get together. Yeah, I know it WAS a big party last time, but you know what I mean. Anyway, I'm linking you to my blog so I can keep checking in. Hope you don't mind. Now we just need Lisa to start a blog.
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