More reality

Today Sarah had an appointment with her GI doctor. It was a routine 'once every 4 or 5 months' thing and I thought he'd just exclaim happily over Sarah's new highest weight of 75.5 pounds and then we'd hit the mall. Well, that's not quite how it went. It always happens that when I assume an appointment is going to go smoothly, I am blindsided. Always. Without fail.
So it started out innocently enough. How is she? What's her weight? Does she sleep well at night? What are her 5 favorite foods? Do you think she is having any pain? How many poops a day? And on and on.....So we had a nice little conversation and then I happened to mention that Sarah now sometimes has trouble initiating drinking. She wants to drink (from a cup) but it takes a bit for her to find the neurological pathway to do it. So I wait with the cup at her lips until she can get the swallowing thing going.
Well, his eyes widened at this piece of information and he ran with it: How do you feel about a Gtube? Are you against it? Long story short, it was decided by yours truly that it would be a good idea for Sarah to get one. She doesn't need it right at this moment, but she will soon enough, judging from the clues I have seen so far. It would be much better to do it when she is healthy than when she is in crisis.Of course, she would have to be sedated for the insertion and we all know how that will go....straight to an ileus which leads to an extended hospital stay.  However, this is important for her future.
In April, Sarah sees her orthopedic surgeon and physiatrist for xrays of hips and spine. Depending on those results, I will discuss this whole gtube issue with them.
For now, the game plan is this: If, for any unexpected reason, she is going to be sedated, I am to throw myself across the body of this child before they sedate her and insist on GI inserting the Gtube at that time.(GI doc's exact words-lol).
In the meantime, I digest this latest news.

And we did hit the mall, after all :) Nothing like a little retail therapy to help a mama cope.Oh, and some pizza!

Reality

Happy New Year!

As I celebrate it with Sarah, I realize that she is turning 16 this year. And I am heading to my mid fifties. It is clearer than ever that, at this point, I just want to afford ourselves and maintain Sarah's good health, and mine. That's it. I don't care about any extras, like vacations or new clothes or a gym membership. Maybe it's because I'm getting older and more tired, or maybe it's because as Sarah moves through the teen years, it becomes more imperative to me that she have a good life. What she considers good.

The thing is, she has no diagnosis. So I am uncertain of the course of her physical condition as she approaches adulthood. So I look for clues...... And I am sensing that things are definitely slowing down. She tremors much more, she is stiffer, she now has occasional trouble maintaining the sitting position. I feel that she is quietly and slowly losing ground, as I run to work, do laundry, grocery shopping and read her books. And that brings great sadness for me. And a bit of panic. It's all going by so quickly. Too quickly.

I sense that this was all was written on her pretty little soul the very first day she came into this world. And my challenge will be to handle it. To deal with it, to make sense of it and to support her in every possible way. Am I am fearful? Yes. It makes me anxious, yes. But mostly it makes me sad. And more determined than ever to make every day a good day for Sarah, as best as it can be. I live in the moment, because her future isn't looking too hot.

So I celebrate New Year's with my girl. With joy. Cause we can!