Day 6

Kickin' back after a long day.

Kickin’ back after a long day.

I am laying here next to a giggling girl, one who has just laughed and laughed for days now. Today is a winding down day for us, and boy could we use it!

The day started out with a big mess as Katelin peed on the bed, right after I took off her diaper. So strip the bed and laundry to do before we leave the hospital. A bit of a snafu with the medicine not being ready, then construction prevented the shuttle from the hotel from picking us up at the usual pick up place, which caused all sorts of confusion on their end, but in the end we got here, only to find out they’ve put us in a different building than the one with the lounge and breakfast area. I didn’t even know they had another building! this just wouldn’t do, Katelin doesn’t always want to get out out of bed for breakfast. So, after THAT got worked out, we are finally settled in.

At least we had things to look at while we waited for the shuttle.

And now I am left on my own with 17 bottles (minus one) of Hope in my refrigerator. It feels monumental. Not as brave as an astronaut on a space walk, but I feel like I’ve taken that step past no return, tethered by a rope of thousands of people’s prayers and wishes and dreams.

One day I want this to be commonplace, I’ll pull a bottle out of the refrigerator, draw it up and squirt it in her mouth and shush shush away the groan that means “yucky”, but now I want each one to matter, to be immersed in the importance of what each dose represents beyond Katelin. Of course, I want her to benefit, I dream of conversations we may have. But, I want that for other children and their moms and dads just as much. I want to do my part well, so that Katelin’s effort and what she’s put up with is not wasted. It’s a larger feeling of responsibility than I imagined it would be.

But, for now I am lying next to my girl listening to her giggle and say letters of the alphabet in order a, b, c, d, e the most I ever heard. Rett Syndrome took that away once, and I know it’s likely it will be taken away again in 30 days or so, but I will continue to fight until even that and more becomes commonplace.

Advertisements
This entry was posted in Rett Syndrome, Trail to a Texas Trial, Uncategorized. Bookmark the permalink.

4 Responses to Day 6

  1. Linda E. Williams RN says:

    Being immersed in each dose is what living fully is all about. Pensive thoughts are normal ; you are so caring and hopeful, they will pass because taking stock of where we’ve been gives better perspective to where we CAN and will go. Can’t wait to see you. Love, L

  2. Buddy says:

    Sending Love to you two 🙂

  3. Cheryl says:

    Hi,
    I have been following your blog each day and it is inspiring! Thinking of you both and sending prayers and love!

  4. Joanna Barboza says:

    I’m up to day 7, can’t wait to read the next!!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s