A wrinkle in time, or just a week

A week ago I posted this pic to my facebook profile with a caption “Flight departs in less than 12 hours. I should be packing but clearly I am just too busy for that right now.”

While that was true, it was really only a half truth. What you can’t tell from this picture is that I was trying to give Chloe some much needed attention as her sister had been getting  most of it lately. The past two weeks had been very hard for Claire as I mentioned in my previous post. We had spent all afternoon in the GI’s office at LPCH the day before and we had pulmonary scheduled for later in the day. We had gotten to the point where all of the sudden all the specialist could see us not because they had time, but because they were worried and honestly, so was I. So to prepare for our second straight day of marathon doctor time we went to the beach. As it turned out, none of the specialist had anything helpful for us other than, this is not good, sorry I can’t help you, call neurology. I was really nervous about leaving with Claire in that state. That is just how she is, no intervention was needed, but I was worried about leaving. Her primary care ped. told me “well, at least if something crazy happens in the middle of the night we all know that she was checked out and everything was fine” As comforting as she was trying to be, it was yet another painful reminder that it does happen, that you wake up and your child doesn’t, morbid I know, but that is where we were at. We finally got home around 5:30 and my ride to the airport was coming at 6:15 so I decided that I did indeed need to pack. Then the most amazing thing happened, Claire came back, just like that, she came back! Jared had taken her to brush her teeth and go to the bathroom and she just popped right back into her body. As I kissed them both goodbye, Claire sat on the couch, straight as an arrow, bright eyes, quiet hands and that sweet smile. It was a really great way to leave, I honestly can not think of any better circumstances to leave under other than maybe being a little more rested. What happened next, as far as going to Boston, being in Boston and then coming home will have to be another blog post, which I will try to get out sooner then later. But you can see from my picture below that I took today, I really am just too busy to be bothered with a lot of things. This picture is a much better representation of what is going on in my life today. This morning we went to the beach not because we desperately needed to, but just because we could.


2 thoughts on “A wrinkle in time, or just a week

  1. mj says:

    yippee for better days. more of those to come…saturday being one of them. 🙂 see you soon.
    (my word verification is: “rests”)

  2. I am constantly amazed at your strength and so lucky to call you my friend. I hope Claire continues to have better days and that Rett Syndrome cuts her some slack.

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