The Rally Day

The above pictures were taken almost exactly two weeks ago, to the minute.  The last pictures I ever took of Laila with her famous smile.  The last pictures of her awake.

Her pain had been steadily increasing over the weeks leading up to that.  I had been sleeping in her room with her for a week or so to comfort and administer meds as she needed them throughout the night.  I laid with her and listened to her stories (very interesting stuff, I will share those another time).  She had been under the care of hospice (managed through her Riley Palliative Team) for almost three weeks.  Child hospice is different.  You can still give TPN and all meds, they just had a better way to manage the pain that we couldn’t seem to get under control.  Some kids are on hospice for years and even come off of their care when they get a little better.  We had hoped for that.    I never shared that she was being cared by them for fear of people thinking she only had a few weeks to live and not understanding.  Except God knew we were the ones who didn’t truly understand that is what His plan would be.

She woke up that Saturday in a better mood than we had seen her in weeks.  Our beloved friends (and therapy center owners) came down and brought us lunch and they got to see her smile and play. It was amazing.  Terry and I even let her have a tiny sip of coffee ;)

She napped and when she got up her mood had declined which was sad but not surprising for how things had been going.  She just wasn’t herself anymore and hadn’t been for quite some time.  My sister and her family came for a bit during that time too.  It was funny looking back through pictures…. her really joyful smile had slowly faded away over the past several months and I hadn’t even noticed.  She still had a smile but it was different.  Maybe something only a momma could see.

She rallied again that night when Tom and Melissa came to see her.  Tom always teased her that she was his girlfriend and that always brought a smile to her precious face.  Tom climbed right up in her bed with her (which is quite a sight at his height!) and let her spray him with a water bottle and “do his hair.”  I remember sitting at the dining room table eating dinner while they played with her and I just soaked in the laughter and smiles.

It was getting late and she really needed to go to bed but Emma had promised her that they would make cupcakes together so instead of waiting until Sunday, I let her stay up late to hang with her “best sister in her whole totally life.” :) Man, I’m so glad I did.  Honestly, Laila was crabby through it and sassed Emma but Em just hung in there with her and let her pour and stir and then while the cupcakes baked, they worked on making crowns from the kit Katie had gotten her for her birthday.  Laila had been asking to do that with Emma but with 8th grade graduation and festivities, they hadn’t found time yet.  They made their crowns and had fun and took pictures.

And that was the last I heard that Laila laugh, heard her Laila sass or saw that beautiful Laila smile.

She knew, I didn’t.  That was her last true day as herself.  She loved on those she hadn’t snuggled with in awhile.  She did things with her sister she had been waiting for.  But she was tired and that night the pain overtook her and from then until the end, I never truly saw her again.

-to be continued