Arms pulling forward and legs kicking for and against the tide to advance towards your destination an agreement between you and the water is found. With practice breathing only adds to the rhythmic action of the swim. Pull, pull, breathe. Pull, pull, breathe. Forward I go.
During some swims I can cometely zone out of the lists of to do’s and issues to conquer. Other times the current, or an errant ball from a group of little swimmers, takes me out of my reverie catching me off guard. Breathing and swim strokes are disrupted. Reality returns and I lose my breath. I already have too much reality.
This long distance swim, waiting for and knowing a rip tide can pull you under any time, IS life with Liberty.
I started back to school two weeks ago and my students started Tuesday. It has been amazing to start getting to know this brilliant group of people. I am already excited to see them every day.
We’ve been just rolling on until yesterday afternoon when something happened with her feeding tube. I flushed it and changed the dressing. Seemed mostly okay. We went about our errands and finally made it home for shower and nite-nite.
This morning I couldn’t get the formula to go into her tube. The feeding tube was no longer placed correctly and has dislodged. Instead of going and teaching the first Friday of this school year I brought her to the ER.
No matter how strong of a swimmer I am I can never seem to anticipate the waves. I can calculate the crazy effect of the full moon on the tides, but not the effect of having Liberty.
Here’s the cyclonic issue: is it worth replacing the tube again? This will be the fourth time since last Thanksgiving. It isn’t fun holding Libby through each replacement. Hoping and praying that once again they can simply trace the last track and put in a new feeding tube. Praying for a few more extra calories for this day. A few more. The singular upside is that her weight has been fairly stable since March.
I’ve had some very difficult and honest conversations with her primary care doctor in the last six months. Since there are no cases exactly like hers there are no maps to follow. Have been advised to keep her happy and as healthy as possible... And to make sure our Power of Attorney covers a DNR. I will ensure Libby’s happiness and comfort every moment I can.
Can’t train enough to be prepared for any of this really. Just have to continue to be the best swimmer possible. And push to keep swimming.
Because they were going to have to change the size of Libby’s tube, they had to sedate her. She now has a shiny new tube and we are exhausted. Time to continue the swim.
Love to all
Ileana
