March 28 2011
Risa has been declining throughout the week and is finally bed-ridden. This has been nothing like we expected and it's certainly not like it's portrayed in the movies. She has been exhaustingly active. We've had to have someone with her round the clock to make sure she doesn't hurt herself as she would get up and mindlessly shuffle around the house with her eyes closed, babbling nonsense. I don't know where the energy comes from since she isn't able to eat anything and she doesn't really sleep at night. The amonia build up in her liver has caused her to feel increasingly confused as it damages her brain. Risa was coherent enough to talk and laugh with the family before our beach trip, but it slowly got harder for her to find the right words to express herself, which would frustrate her, and now she doesn't speak at all. We take shifts at night and throughout the day to watch her and help her through the seizures which started happening regularly Sunday evening. Although it's easier to taker care of her now that she's confined to a bed, it's so heartbreaking to watch her steadily lose her ability to do simple things. She is now unable to swallow properly, so we have to apply her medicine for seizures through a dropper and make sure she doesn't choke.
In sacrament meeting, the closing song was "Abide with me 'Tis Eventide" and the words struck me at a very personal level as we've been tending to her through the nights.
Abide with me; 'tis eventide. The day is past and gone;
The shadows of the evening fall; The night is coming on.
Within my heart a welcome guest, Within my home abide.
O Savior, stay this night with me; Behold, 'tis eventide.
O Savior, stay this night with me; behold, 'tis eventide.
Abide with me; 'tis eventide. Thy walk today with me
Has made my heart within me burn, As I communed with thee.
Thy earnest words have filled my soul And kept me near thy side.
O Savior, stay this night with me; Behold, 'tis eventide.
O Savior, stay this night with me; behold, 'tis eventide.
Abide with me; 'tis eventide, And lone will be the night
If I cannot commune with thee Nor find in thee my light.
The darkness of the world, I fear, Would in my home abide.
O Savior, stay this night with me; Behold, 'tis eventide.
O Savior, stay this night with me; behold, 'tis eventide.
Although me and my family have no idea what Risa is going through as we take care of her every hour, our Savior understands every pain and sorrow we experience and He will never leave our side, even through the darkest nights.
