Sunday, July 29, 2012

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

29 comments:

Auntie Mip said...

My sweet Mo,

Just returned from a week at cancer camp. A camp for. The entir family of a child with a cancer diagnosis. A camp where every chld has their won camp counselor. A camp where parents get a date night. A camp where moms have a tea and dad's smoke cigars, drink beer and hit a bucket of balls. A camp where siblings matter as much as the child with a cancer diagnosis. A camp I havebeenhead nurse at for 16 years. A camp where for one who,e week we LIVE in a big and joyful way. There are tears to be sure. But there is so much life at Camp Agape NW. Agape is a greekword for perfect love. That is camp. I have been a Peds oncology nurse for 26 years. For my entire life I have been the surviving sister of a brother lost to leukemia. Death is just death. Life is a gift. What a week I had.

P.S. at our closing candle lighting ceremony I lit a candle for Jake and said a prayer that he visits you all often. I am an auntie too Mo. My beloved 8 are my whole world and I live each and every day for them!

Auntie Mip said...

Oy...friggin iPad! Please forgive my many, many typos. I really can spell, punctuate and type LOL!

Zhohn said...

Aww. We will never know why gabbi thought that was Jake, but what we do know is that he is pain free and cancer free! That movie was so touching, i cried and cried and actually thought of your family. I really can not imagine going through that. You are right Mo, we must LIVE while we are alive!

I remember the press and seal ;) and the video of you and Jake singing, such a sweet boy. The wagon at St. Jude ;) The four-wheeler 'set up' y'all made for him. I love love love that y'all let Jake LIVE every single day of his life. He lived more in his few years than most of us adults. He was so loved, every post I read, every picture I looked at...i could feel the love! Love was everywhere.

I can never thank y'all enough for sharing Jake and his journey with us. I learned so much; to never give up, live each day, shower others with love and most importantly to BELIEVE!

Always believing because of your sweet blue eyed nephew!

Stacey said...

Great post!I remember alot of great posts on Jakes site. It crazy how time flies. It doesn't seem like it was that long ago I would check on Jake, Emma Grace and Stanton. Too many have been taken by the C word including my great Father In Law, LeRoy this year. Thanks for this Post. Hope you have a great week!

Stacey

Judy Cousans said...

You are an amazing woman with MANY amazing gifts. Thanks for sharing your heart! What an awesome tribute to Jake and a reminder of how we should all live and LOVE!!
Judy

Marcia said...

What a beautiful tribute to your nephew. Thank you for sharing your heart with all of us and reminding us how to look at that cup as half full. You are an inspiration! Marcia

Mama J said...

Thank you for sharing this today. It gives us a vision of reality in the world of cancer and other diseases that take our loved ones too soon. God is such a master at showing us how to live through young children..if we would have faith as a child, we would fare much better in this life. Thanking God for peace that only He can give us.

Amy K said...

While I can't relate to the movie on that personal level you did, it moved me to tears throughout, as did today's post. Jake was an amazing boy, whom I got to know and love through your words on Caringbridge.
Yesterday's message in church was about "God moments", and I think Gabbi's comment was just that, a God moment. The things we can all be thankful for in the whirlwind lives we live!
Thank you for sharing your heart, and the sweet reminder to LIVE!
Blessings...

Lisa said...

Wow - I'm really impressed that y'all watched the movie - I can't!! And our outcome was different, but I still can't. I did read the book and cried off and on throughout it. I refused to watch the movie though, since it ends differently than the book - like way differently. I'm glad to know that they portrayed the story so well of what it's like. It's nothing you can describe to anyone who hasn't been there. We've told Cole's story many times, but no one ever really gets it the way another cancer family gets it. When someone asks us about our favorite times together - they are mostly all in Memphis. We have great memories from there - all great for Cole since he doesn't really remember the bad times. I was just talking with someone the other day about medicines and side effects and how crazy they can be. I told her about Cole, after surgery, before radiation and how moody he was and just cried for no apparent reason. I remember stopping in front of the snack and coke machines, on the way out of the cafe and you and your sister were there with Jake. We had already talked to y'all a few times and we were very aggravated that we couldn't just make Cole feel better. We didn't know why he was acting the way he was. Y'all were like 'is he on steroids?' - and he was and we finally had an answer. You both recognized the behavior and suddenly we were so relieved. It's just the meds!! Most of what I remember from that time is families being there for us - y'all were the first. People just helping out and being there.

Aw - I rambled on too long. Anyway, just wanted to say thanks for sharing and just maybe I'll have to watch the movie one day.

I always think of y'all when I see 11's - and probably always will!

Lots of love!!!!

Yvonne said...

I agree with you, My Sister's Keeper is spot on for life in pediatric family world. If you liked the movie, the book is sooooo much better. There were changes in the movie that took away from the story in just a way that it left me thinking, what?! Such as the ending of the movie is entirely different. The book ending, although sad, is much better.
I am a St Jude parent and as I read this book I felt like someone was reading my inner thoughts and feelings. I cried, I laughed and I was amazed at the ability of the writer to write something so real. In your crazy, busy, fun life, I hope you can find time to read it.
Hugs to your family!
Yvonne

Shannon said...

I would imagine that you will grieve Jake's lost with your last dying breath. Grieving is good for the soul...
Psalm 126:5 - Those who sew in tears shall reap in JOY.
Did you get that Mel? JOY!

Shannon said...

***loss**

Susantwilhelm said...

Hugs, my friend. I watched the movie this weekend as well. Didn't know if I would get completely through it, but did. Think of Jake, Emma Grace and Stanton almost every day. Thanks for sharing your story --

Sharidrew said...

That was a deep post! That movie was very touching and difficult to watch. I can't imagine going through that personally. You are a wonderful person, inside and out! I'm proud to call you my friend. (even if we've never met in person) You send a great message and even if you had to go through something so terrible, you see the positive in it. Jake sure did make a huge impact on your family and obviously others who knew him or read about him. Keep on keeping on my friend. Live with no regret! God bless you!!

Hugs from Missouri,
Shari

Sandy said...

What a way to start a Monday.... Mel I have been "obcessed" of Jakes story since it began. I can never express how much he touched my life. Your family is an awesome family and I will always admire you all for sharing not only his story but his life with the world. I am very blessed to have been one touched by Jake. I too sometimes see 11:11 and say Hi Jake. He was an inspiration to many throughout the world.Thanks for sharing his story.

MaryH said...

I followed Jake's story on his Caringbridge site. 11's mean something different to me altogether now. The Believer Express is also something else I remember - and Flipper...Thank you for the post - I hoped it helped you as much as it reminded me of too many things that get in my way of enjoying every moment. I will always remember that smiling bald little boy with the big eyes that graced his homepage.

Melissa Lanier said...

I have followed Jake and y'alls life since Caringbridge. I have to tell you that ATLEAST once a week I will see 11:11 on the clock and think of Jake and say a little prayer. He has touched my life and I never even meet him.

Melissa Lanier said...

Beautiful post BTW

MaryH said...

I followed Jake's story on his Caringbridge site. 11's mean something different to me altogether now. The Believer Express is also something else I remember - and Flipper...Thank you for the post - I hoped it helped you as much as it reminded me of too many things that get in my way of enjoying every moment. I will always remember that smiling bald little boy with the big eyes that graced his homepage.

Michelle said...

Goodness Im in tears just reading your post. Thank you for sharing! What a blessed little boy to have been born into such a loving and supportive family. I love love love how you continue to talk about him and do good in his name!

Rupa Rao said...

Amazing post about an incredible boy.... Never knew Jake except through CaringBridge and still think of that cutie every time I see 11s... You are an amazing aunt Mo.

jenny said...

Grieve on, Mo - whenever and however you feel like it. There IS no right or wrong to grief. Everyone experiences it in his or her own way. Glad you can talk about, remember, CELEBRATE sweet Jake's life. Remembering with you...

Diana said...

Wow Mo, Just a beautiful post about Jake. I too remember your posts when Jake was in treatment and how all of you tried to keep his spirits up (and you all did just that) You worked as a team and your main focus was Jake and getting him better.
Keep up all the good work you do for the families in Jake's name.
Diana from Colorado

Renee said...

What a sweet and heartful blog. Hugs to all of you.

Lynette said...

Beautiful post, Mo! As I walked into my bedroom tonight my clock said 11:11 and I said "hey Jake" as always and then just finished reading your post.. Awesome! I always referred to Stanton, Emma, Jake and the others as my cancer babies that I followed on Caringbridge. They taught all of us so much.

kimybeee said...

love you - and i remember halloween trees & m&m's and hunter's bald head and the four wheeler rides. jake had a lot of living packed into his four short years!!!!

Maggie said...

Mo,
What a walk down memory lane! The love and JOY and closeness of your family is what first made me feel so connected to you, like I wanted to KNOW all of you back during those CaringBridge days. It was clear that you were embracing life and the positivity through unspeakable struggle, and that was such a powerful message for me at the time when I first learned of Jakes site.
I'm glad you tell people about the amazing things that have been born from Jake's short life, but don't forget that YOU are one of them too. It is staggering to think of the number of lives you yourself have touched through simply blogging! Both through CaringBridge, and now on MoJoy. Include yourself when you think of the ripples of Jakes life here on earth, and think of all the people who reach out to you to get strength though you. At least I know in my small way that I do.
When I think of the canvases, talismans, jewelry, art camps, showing us the way you and your friends celebrate every event big and small... football games, New York, birthdays, graduations, dance lessons, charities, recitals, a quiet Sunday with beautiful weather... the moving of your cottage, building of your BAH... For goodness sake, you invited us along to pick out your paint and tile! And I'm forced to wonder how many people gathered the courage to paint a room turquoise directly because you remind people every day to LIVE... I don't have a house of my own yet, but when I do, I will email pictures to you of the bright colors I will use, because you have shown me how fun it is to take risks and how even something as little as that can be exciting.
MoJoy was directly born from Jake's life, and along with it, this new avenue you embraced to connect with strangers, trusting that positivity and joy would bring the same back to you ten fold, and I hope, and I think sincerely that it has.
You've made me life better Mo, and I really have Jake to thank for that.
Maggie

CDearing said...

A beautiful post in honor of such a precious child. I was following you way back then and remember so well how you all lived in the moment for Jake. Thank you for sharing your heart.

Beth E. said...

What a wonderful tribute to sweet Jake. I remember well all of the sweet, crazy, funny things your family did during his illness, and reading about everything on the CaringBridge site. It was then that I learned what an amazing family you have. You stick together, supporting each other through all the highs and the lows and living life to the fullest. Thanks for being such an inspiration to us all!