HOPE'S STORY, PART 8: "I PRAY THE LORD MY SOUL TO KEEP"

From my mom's 'journal':

October 18, 2011:
Yesterday we got to spend another sacred day in the presence of a divine being.  In the morning, Tyler's parents visited with sweet Hope, so I was able to get some university work done.
Just after noon, Caeli and Tyler picked me up to go to Temple Square.  First we walked around the temple grounds soaking in the wonderful spirit inspired by the temple.  An older sister missionary approached us to ask about Hope.  When she saw how tiny Hope was, she asked her age and wondered if she was a premie.  (That is what all the people in Temple Square thought when they saw her.  Hope probably weighs 4 pounds or less now.)  When Caeli told her that Hope was sick, the sister suddenly realized that she was in the presence of a sacred spirit.  Her eyes filled with tears of joy as she expressed her awe.



From the temple grounds we went...to the northwest Visitor's Center to see the Christus Statue.  For those of you who do not know this statue, it was done by a Danish artist named Albert Bertel Thorvaldson, and is a beautiful depiction of the resurrected Jesus Christ.  Here is a video clip of it:

It reminded us of the great sacrifice that was made on our behalf and allows us to be resurrected someday with perfect bodies.  Someday, Hope will have a perfect body, too.

I believe that if Hope were able to grow older here on earth, she would be a pretty tough kid.  Hope has beaten some amazing odds and she is now very obviously experiencing pain, yet she has never cried.  She has yelped a couple times when her encephalocele was bumped and she has made some cute little girly sounds, but she has never cried.  Some of her expressions tell us that she is struggling with something, and she does it with concentration with reddening eyes.  Some of her expressions have furrowed eyebrows and scowls and even scrunched up mouth and eyes, but she does not cry.  Maybe she would be (and is) a really tough kid, bearing all, but then again, maybe it is all the prayers on her behalf.  Her lack of pain, or her ability to handle the pain, is the greatest blessing.

Today Hannah and I arrived with lunch for Caeli (Tyler was at work), but she wasn't in the mood to eat.  She was struggling to help Hope feel more comfortable.  Hope's dehydration is quite noticeable now, much more than yesterday.  She is swimming in the clothes she used to fill.  You can see where her skull bones are separate.  Her beautiful almond eyes are more sunken.

Yesterday I noticed her breathing more heavily a few times, but today it lasted longer and seemed more strained.  We didn't talk much the first couple hours.  Hannah (Caeli's sister) did the dishes and I did laundry while Caeli held Hope.  Finally the oxycodone Caeli had been trying to get under Hope's tongue kicked in and Hope became calm.  Hannah had to leave to get her kids from school.  Caeli slept on the couch holding Hope and Hope drifted in and out of sleep.  Tyler came home and scooped up Hope in his loving arms and talked to her in his fun way, calling her "Hope-ster."

I finished removing a label that was stitched onto the Moby wrap and called Hannah for a ride home.  We left too early for me to tell Hope to sleep tight.  I just kissed her.  I'm thinking of the prayer that my parents taught me to say at night:

Now I lay me down to sleep,

I pray the Lord my soul to keep.

If I should die before I wake,

I pray the Lord my soul to take.

October 22, 2011:

There is not much new to tell.  Hope turned 4 weeks old yesterday.  Caeli and Tyler are struggling with their decision to avoid life support.  They know they would just prolong Hope's agony, but it is so awful to watch her wither away.  This is one of the reasons the doctor's advised them to terminate Hope's chance at life.  Caeli cries a lot more now, especially when she thinks no one can see or hear her.  Tyler is still strong, but there is a lot of pain in his eyes.

Hope still smiles.