I don’t like uncertainty. I don’t like to wait. I don’t like ambiguity. In other words, I want answers now. I don’t like to wait and see.
But life keeps throwing me circumstances that require me to “wait and see,” a phrase often used in Ellis’ doctor visits. Our current concern is getting her vocal chord to recover its usage again.
One thing I know for sure is that Ellis’ left vocal chord is not moving. This was evident at an ENT appointment earlier this week: a long thin tube with a camera at the end was inserted into her nose down to her throat. I held her face forward in my lap while a nurse stood behind me holding Ellis’ head steady. The doctor told Ellis it may be slightly ticklish when the line goes into her nose and may even find some boogers while it was there.
She did a charity chuckle. She wasn’t buying any of it. She had two tasks while the camera recorded her vocal chord movements: say “eeeeeee” and drink a few sips of regular water and then the thickened water. It was traumatic: lots of screaming, crying, and rapid breathing.
The camera recording of her throat showed that only the right vocal chord is moving. Normally both the left and right sides open and close shut together to keep food or liquid from entering the airway. But she has a small gap where the right one does not meet the left when it closes. Her body intuitively knows something is not right, so the right vocal chord is compensating for the lack of movement in the left one.
Afterwards, she met with a speech therapist to do a vocal quality test by making different sounds into a microphone. Her voice sounds raspy and breathy because air leaks through the gap in the vocal chords.
Elliot was upset that he couldn’t come to this appointment with us. So I explained that this was not a regular check up that he is used to seeing; this one would have freaked him out. Ellis bravely, with a proud look on her face, described to him what happened at the doctor’s office. Elliot was surprised when he heard that the right side was helping the left and said, “awww, that’s so nice of the right side to do that.”
Her body has gone through a major ordeal, so it’s only natural that recovery takes time. In the meantime, I need to stay vigilant so she doesn’t sneak in gulps of thin liquid; make sure she gets her daily amount of water intake through mouth or stomach tube; remind her to do a slight chin tuck and turn her head to the left so it helps to close the left vocal chord…this is when she absolutely must drink water for sanity purposes (for all of us); and have endless arguments…I mean cordial dialogues…of why she needs to trust me with this.
The whining is wearing me out not to mention the constant monitoring I have to do. I offer her thickened liquid when she wants water. She cries, gives me a mean frown, and yells, “OK, this is the LAST TIME. Tomorrow I want regular water.” After a sip, she presents me with her ever changing requests for pretty things. And so the cycle continues new every day. There is no definite time frame of when it will heal.
I need an attitude change in the meantime. Patience is low and self-criticism is at an all-time high. I feel the need to do more and be more…whatever that means. It’s a constant nagging thought I have that I’m not doing enough. Sigh.
This would be the perfect time to pray although it’s the last thing I want to do. Then there is another side of me that believes God listens and answers prayers of all kinds. He’s done it so many times in mysterious ways! I need to trust that he’ll get me out of this funk soon and replace it with peace that is not driven by life circumstances.
One of the many bible verses that help me remember this:
“Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.” Philippians 4:6-7