Sunday, May 18, 2014

Seriously, what is my problem?

I've been working on this blog post for the last few days.  Just continuing to process it all.

Seriously, what is my problem?  The last few months I have learned about a few acquaintances I knew from a previous lifetime ago had suddenly past away.  People my age.  But do I feel sad about it?  Maybe a little.  Do I feel terrible that I am not more sad about it?  Definitely.  Did these people not take care of the one body they were given?  I'm sure more than others.  But is there any comparison to those children dying of cancer?  To me...not even a little.  Yes, ok, they were someone's baby.   My point being that our children who were once completely healthy are suddenly struck with this abominable disease called cancer and have to be basically poisoned and medically tortured in order to cure them.....we'll that's just unacceptable.  Everything about it is unacceptable.  The fact that childhood cancer gets so little funding; the fact that big pharm companies don't prioritize it because its not profitable enough; the fact that we are giving children medications meant to treat adults and meds that are over 20 years old.....any of it.  I feel like a broken record.

I'm on Facebook a lot.  Probably too much but it helps me stay connected.  It helps me remember why I'm here still fighting the fight.  I don't want another parent to have to go through this.  I don't want another parent to hear the words, "your child has cancer" and I especially don't want anyone else to hear these words, "....there's nothing more we can do".   Many times the children's stories are just too much to follow, especially hearing so many of them.  But every once in a while, one will pull me in.  A story I can't turn away from.  Suddenly, I am back in the battle...for them.  Living their nightmare, crying for them, sharing their joys and pain.  Yes, it's draining and it can't happen often.    The fear that this could be my child fighting again is real.  It's there and it will always be there.  The fact that this cancer could reoccur or that she could be stricken with a secondary cancer from her "treatments" is always lingering.  But I keep it at bay.  I learn to control the fear.  Maybe by being so busy?  Possibly.

I think I'm maxed out on my emotional capacity and just don't have enough tears for everyone.  The children I follow and the past journey we traveled has already taken so much out of me.  It's made me less tolerant of the silly things in life.  Perspective.  It's made me mad and ready to fight.  And, yes.  It's made me stronger.  But does that mean I have to have less compassion for the rest of the world who isn't a child and fighting cancer?  Not at all.  But I am only human.  I used to be a big cryer.  Cried over lots of things...little and big things.  When I was upset, I would just call my mom and hearing her voice would just make me cry.  It seemed silly to cry so often but it was a good way to "get it out"...whatever "it" was.  Now, the tears are infrequent and seldom.  I'm trying to figure it all out still.  Why do I cry less?  Is this ok?  Did I just run out of tears?  Am I less sensitive before cancer and has it just jaded me?  Or am I so angry that children have to deal with cancer that I just want to fight.  Sometimes I feel like a bull in a china shop.  "Stay out of my way of fighting pediatric cancer...or else."  But I have to balance myself.  I have to maintain compassion and understanding for the world around me.  Easier said than done.

It dawned on me the other day.  I have such little tolerance for people who complain these days.  Ok, I get it, the "every once in a while complaint with your girlfriends" is totally ok.  It's actually enjoyable and it makes me feel normal.  But the constant, non-stop complaining, and whining about life.  I'd like to take those people, stick them in front of a mirror and say...Take a look...Take a good look.  Why the hell do you complain?  You are healthy, you have a job, you have a house, your children are healthy yet you are constantly complaining...about life... about things that some people would kill to healthy LIVING children!  I want to tell them...shut up.  Just shut up.  If you have so many complaints about life, then get off your butt and do something about it!  FIND A SOLUTION to the problem.  Ok, enough on that.

Honestly, it seems kinda silly to me to update our blog these days but it's therapy for me.  I'm not sure if anyone is still out there.  I'm not sure if anyone still follows us, except for on Facebook.  I know that there are so many still with us on this journey and for that, I am grateful.  I hope we can pull in more.  It is a journey that will always continue.  Once you enter this world of pediatric cancer, you can never leave.  My wish is to have more people care about this cause and more to contribute to the lack of funding for childhood cancer.  My wish is for it to go away.

I don't want to be the mom that pays so much effort and attention to fighting childhood cancer that I forget to spend time with my own kids in the process.  After all, we had to fight through hell and back to have healthy, living children.   So, please, please help me fight childhood cancer.  Help US fight childhood cancer.  Just take a few moments out of your busy spread awareness, to join a cause, or to raise some well needed funds.  I'm just a mom.  I'm not a salesperson (sometimes I feel like one doing all of this "business" type work).  I'm just a mom fighting cancer.
Cancer parents can't do this without you.  We can't do this without your help.  Please.  We need to fight childhood cancer....together.

Just in case there are some of you out there...

My Girls

What more can I say about my girls?  They are sweet, adorable, smart, sassy, kind, full of attitude, compassionate, and I love every ounce of them.  They are growing up so fast.  I'm not complaining.  I love seeing them grow up and become smart, intelligent, individual beings who can make choices on their own and do things for themselves.  Can I say that I miss them as babies?  A little.  Every once in a while, I look at their little cheeks when they are asleep and it reminds me of their cute chubby baby cheeks.  Will I miss this stage in 5 years, absolutely.  I'm trying to suck in every moment with them while giving them space to grow and doing things for me...that is, work, exercise, and growing the foundation.   It's definitely a balancing that is.  Everything it takes to be a mom, a parent, a wife and all the other activities have to be balanced out every day.  But I love it.

Bridget just celebrated her 4th birthday.  We actually had a little party with some of our favorite people the night of her birthday (the night before Mamas Night Out) and a birthday party yesterday with more of our favorite people.  My Bridgy is just incredible.  Talking and saying so many funny things.  She's just full of vinegar and sass but has so much compassion.  I just love her to pieces.

Gabriella is getting into dance and has her first performance coming up.  She is just blossoming into an amazing child.  As her hair started growing, so has her personality and everything about her.  Just incredible to see.

Both girls are swimming like little fish in the water, Bridget is doing gymnastics and Gabriella is doing dance and Spanish class.  We are always running from here to there for playdates, classes, school, errands, etc.  And I love every minute of it.  Our plate is full but I wouldn't change it for anything.

Mamas Night Out

What an incredible night this past Mama's Night Out.  I loved every bit about it.  Yes, it was crowded and we are looking into changing the venue for next year.  But, wow....the love and energy and compassion filled the room that night.  It was inspiring and powerful.  I'm so proud of the ladies that are helping to make a difference.  Its an honor to work with know who you are ;-)

I'm sure you all will get bored of this writing, but I love it.  Here's part of my speech for the evening:

I belong to a special group of women.
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in…..for life.
Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.
Words like chemo, IV, Zofran, bald heads
Are always parts of our conversations …
We always know where the closest puke bucket is,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.
We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.
We can live for days on hospital food,
And maybe only ONE meal a day.
We know the names of up to 20 different drugs, their purpose, dosage and time to be taken.
We are always on call…….24 hours a day…..Seven days a week.
We are used to not always looking our best,
Make up, hair styling, skirts are words of the past.
We have become addicted to texting,
hospitals, clinics, home, wherever…
We talk sometimes at all hours of the night,
We know we can count on someone to be up.

Then for one of us, the world stops.
She has to walk away, broken.
This job is over.
The job is over, but the fight is on.
Remember, I said we were in this forever.
We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen, we vent, we cry, we laugh together.
We share our lives and our deaths.
We share our pain and our victories.
We are strong, but not by choice,
Sometimes we win, sometimes we lose,
But never are we defeated.
We are not doctors,
We are not oncologists,

Ok, gotta get back to my mom duties today.


1 comment:

  1. Still reading... started a long time ago, I think someone posted the blog address on facebook. Thanks for the updates and pictures.