This is not getting easier. In fact, this is getting more difficult by the day. I can’t be having another pity party.. it’s too soon!
I have so much confusion in my head right now that I can’t even sort it out tonight. The meeting today helped me to sort out a few of the variables involved but the list is just so long…
- Getting enough fluid to avoid dehydration
- vital stim therapy
- removing tape- and the trauma related to that
- thickening her liquids
- tough love discipline
- blended foods
- G-tube feeds
- Core muscle strength
These are just the variables I can think of that are all a balancing act and there is so much pressure to get the most out of these 30 days. And I guess my expecations are not crushed but just so different than what I planned on. I should never use the word “plan” anymore. I hear chuckling.
I thought going through this would make our lives easier when we go home
I thought going through this Gabi and I would bond and grow closer and read and snuggle
I thought going through this we’d conquer her chewing and swallowing
I thought going through this we’d simplify things
Instead, we are not even working on chewing. They are blending up her foods
Instead, Gabi is protesting everything and I am having to balance the positive and negative reinforcements more than I have ever had to with her
Instead my life coming out of this will be much more challenging with blending all of her foods and thickening all of her liquids
Instead of hoping to get off the Gtube, I am wishing we could just use that thing for the rest of her life.
Instead of my hopes for Gabi to have an easier days ahead, she will have to work harder than ever
Instead of simplifying things, they are just getting more complicated… but in a good informational way.
I don’t want to face another day like today. I just want to eat an ice cream sundae with hot fudge and pack up and go home.
But I’m pretty sure that’s not what’s going to happen. Ethan and I are totally dependent on God’s love and grace right now. It’s liberating yet also terrifying.