Remembering Jake today.

Warning... I am having a bit of an epiphany today and this post is a bit deep.... for me, anyway.

WOW.  I watched the movie, My Sister's Keeper, this weekend.  Staci watched it earlier this summer and warned me.  As you may or may not recall, I have not returned to St. Jude since the last day we walked  out of there with Jake.  I consider myself a pretty "tough old broad".  I am relatively strong in general, so why is it that I have this resistance to returning?!  I don't really know.  I have definitely kept a distance to all things related to pediatric cancer.  The only thing we do is try to keep his memory alive in the most joyful and happy way.

So, let me just say, this movie was the most accurate portrayal of a family living through the process of seeing a child live and die with pediatric cancer that I have ever seen. Let me give you a few examples of why the movie struck such a cord with me and basically why I cried throughout just about the whole movie. 

First, there was the family unit.  During Jake's ordeal with cancer, our families (Raborns, Masseys, and extended as well), bonded like never before and never since.  We had a routine of joining or exchanging places in Memphis with Staci or Don, on a weekly basis.  I had a regular date at the Monroe Airport to fly directly to Memphis and be in his room by 8:30 and before they were even awake.  There was a time in the movie where the family takes a trip to the boardwalk.  They are totally giddy with each other.  They smiled and laughed and take photos together in the silliest  poses.  That so brings back memories of our attempts to live in the present, never guaranteed another day, and just loving Jake and giving him every opportunity to live normally as a three year old, despite a variety of lines coming out of his chest and oxygen tubes giving him good air to breathe.  The nosebleeds, the spontaneous vomiting, with whoever is the closest running to his side to hold the trashcan. Wow.  Watching this movie, it all seems so unreal, but until you've lived it, you can't realize that it is totally real!  They depict it perfectly.   They remind me of our family in how they would bring levity in the midst of a very serious and dire situation.  For instance, the family realizes Kate (the character in the movie with cancer) is on her deathbed and they are all somber.  The mood in the room is too heavy, and they break the ice with "Anyone want a pizza?"  That, too, seemed like a crazy Raborn/ Groves kind of thing to do.  Wearing LSU costumes (all 15 or so of us) to the hospital, blowing up that jukebox on the second floor of St. Jude, and going to the beach TWO times in the same summer that we went to Disney World TWICE.  We were gonna definitely help him LIVE while he was alive!

The movie family takes Kate to the beach, per her request.  She is wearing a nasal cannula and cannot run and play with the rest of the group.  The doctor allows this because he knows the ultimate end to the journey they are on and wants Kate to fulfill her every wish while alive.  Many of you who read my  blog were along for the journey when I was documenting it on Jake's Caringbridge site.  So you will likely remember our trip to the beach (both of them!!) during the summer before his bone marrow transplant.  You will likely recall how we spun him around to wrap him in Press and Seal Saran wrap to keep his "buddies" (central line) from getting wet.  As if!  We knew it was just to make us feel better about letting him jump right on in that pool, which he did over and over and over, against the warnings of the doctors.  Sometimes you just gotta go for it.  There are things worse than dying.  Dying having not lived being the main one! 

And so we tried to help him live every day of his young life.  Another movie similarity is the impact the disease had on the siblings.  They were so strong, just like Hunter and Hayden!  The entire focus of a famly whose child has cancer is that child.  Everyone else takes a back seat.  The only thing that matters is getting that unhealthy child well.  Avoiding death.  It is so sad for the siblings.  Sad in the  movie, and sad in real life.  They had to be so strong.  They had to watch when Staci and Don would carry Jake to the operating room, again, to have a procedure that noone would be sure of what the outcome would be. And little Jake didn't even know what he was being carried in for.  But, I can say with certainty, that he was rarely scared.  He was loved, and he knew that.   And that was all that mattered.

In the movie, when they go to the beach, there is such pleasure taken from Kate when she is on the beach and just feeling the sun on her face.  I recall the same great satisfaction with the simplest things with Jake... jumping in a water puddle, playing McDonald's, singing his favorite song at the top of our lungs.  ANd what a coincidence that it was Tim McGraw's "Live Like You are Dying".  That was the whole thing, and the whole point of this post today.  To remind you to do just that.

In the movie, Kate's sister is suing her mom for rights to her own body, not wanting to be used anymore for bone marrow donation or kidney transplant donor, etc.  She is in the courtroom where the judge has just come back after losing her own child to an accident.  When someone tells the judge, "I'm sorry".  She says, "Don't be.  There is no shame in dying."  I really liked that line.  I find myself saying something similar when I am telling someone about Jake.  Obviously, Jake was not my son, but he was about as close as anyone could ever be to being my son! And I for sure felt like I loved him as much.   And so, I will tell you that from my standpoint, as his aunt, I have always felt the same way.  I don't allow anyone to say to me, "awww, that's so sad" without my response being, "No it's not. A whole lot of good came out of his life.  An entire foundation was born out of his death, and over a million dollars has been given to families in the same situation."  How many people can say that?  Not only that, but I usually go on to remind that person that we are all going to die.  We don't know the length of our lives.  Only God knows that, and He knew that Jake's life would be short but very influential!  At the end of the movie, Kate's sister, Anna, says, "Death is just death".  And that, too, is pretty profound.  That's all it is... death is just death.  So, live while you are alive! And now that he is gone, we find ways to remember him.  Kate's family would go to visit Montana every summer, as that is where she said she'd be when she died. In our case, we say "Hey, Jake", when we see 11's.  And I see them EVERY single day.  STILL!   Also, we celebrate his life when we let balloons go or when we visit the beach and still use his floaties, his sippy cups, and see his little bald head in the photos in our condo. 

When they are visiting the beach in the movie, the song, "Feels Like Home" comes on.  It was my one and only song sung at my wedding.  It's one of my favorite songs in the world.  And one more thing that made me feel that I was meant to watch this movie and to feel the things I was feeling.  And ultimately, to write this post today. I was crying on and off during the movie, and trying to hide it from my curious little girl.  Gabbi walked in on one occasion, looked at the tv and said, "That's Jake".  I am being totally serious.  I am sure she was relating the bald heads.  But Kate was a teenage girl.  Jake was four year old little boy. And still she saw her as Jake.  Or did she?  Did God maybe have her come and say that to remind me that it is ok to sometimes grieve.  And remember.

Just my thoughts.

MO