Pearl - Chapter 1 "Embrace"

Photography by Randy Bacon

The Prologue:

“There is nothing in our power, besides prayer, to change this.  So the most important thing is to make sure you remember all the good memories and you have to take the bad, absorb it and put it aside. And you say "okay how can we make this better...how can we fix this...how can we have a good day?"  When they give us the worst news, we take it, we embrace it and we move on. We've learned to accept the cancer and not hate it. It's part of our lives. It's what we do. It's part of everything we do every single day.  We don't let the enemy take away our joy.  We play with her just like she is the healthiest thing in the whole wide world. We're gonna make the best of this. We will come out ahead and we cherish every moment that we have with her."

Documentary short film taken from the full-length multiple award winning movie, "The Last Days of Extraordinary Lives". The movie was created by the Academy award winning Earthworks Films and award winning filmmaker Randy Bacon.

The Story - Chapter 1:

"A lot of people say how unfair this is, and how can this happen to such an innocent child, how can this happen to such a good family?”

We tried for a long time to have a baby and we got pregnant and brought Pearl into this world...and then she ended up being sick.  And my husband said to me one time when we were talking about fears and he told me that his biggest fear was to have an unhealthy child.  And I don't know if that is why God gave her to us...was it because he knew we could handle her? He knew we were great people and that we could take on the task?  I read this poem that said, "why does God give a mother a child with cancer. and the poem goes on to tell you "because she is not selfish, because she can give her life and because she can provide."  And that is what we have done.  The journey has been a roller coaster. It's different every single day.  Someone said to me, "it is like a marathon." I honestly feel like we are running that marathon and we are nowhere near the end yet. 

Everytime Pearl went anywhere she had a hair bow, because the most important thing to me was how she looked on the outside. She was a beautiful, beautiful baby. She was dressed up every day. Her hair was perfect. Her outfit was perfect. And then life changed for us. And then it didn’t matter any more, about her outfit. It didn’t matter about her hair bow. She lost her hair, so that didn’t matter anymore, either.”
 
We came home from the hospital right before Christmas, and we wondered if we should put up a Christmas tree. Chris and I looked at each other and said, ‘If it’s our last Christmas, we’ve got to have pictures with her with that tree.’ And so we came home from the treatment center, exhausted, and the very first thing we did was put up our tree and start celebrating Christmas. We celebrated that day because that was the day that we had.

And so you start learning that all of the those things don’t matter. What does matter is the embrace and the time that you get to spend with that person. It doesn’t matter what you’re wearing, it doesn’t matter what you do, but the seconds, and the minutes, and the moments that you just sit talking...and reading, and playing, and teaching and interacting together. And when she reaches over and says, "I love you too and I miss you", those are the things that are important. And I don’t remember any of the other things anymore.