Tuesday, September 16, 2014

Truth Telling: Not Everyone Likes Me

Despite my best public relations skills, I can't get everyone to like me. I try. I try so hard. Then I fail so hard. This summer, I shared with you a very personal experience with being hurt by a friend. Sharing that experience led to more criticism and a round and round circle of panic, hysteria and insults.

It is now September. I am not quite over it all. I think that is okay. I also think it is entirely okay for me to share my feelings about being trashed. I think it okay that I do not have an interest in hearing the other side of the story. I am not a judge. This is not a legal matter. This is my life and my emotions and my heart that I must protect. It is my children who I also must protect. And if that means not being fair and even, well, so be it. Life isn't fair. Life isn't even.

I think it is also okay for those closest to me to make generic remarks about my nemesis being mean or jealous or whatever, without my pals knowing who the nemesis is exactly.

Yes. It is okay to raise me up by telling me that I am prettier than my worst enemy. I'd do it for anyone I loved. As petty and shallow as it is; I would do it in a heartbeat. So, there, that is my greatest truth:

I am not a saint. I am a shallow. Just like you.

What I've learned through all this, is that no one wants anyone to say anything when something is wrong. No one wants to hear the cry, "hey, hey I am uncomfortable." Because it can be really uncomfortable when someone is uncomfortable and totally uncomfortable listening to it. Everyone likes to complain about complainers. Everyone has an opinion, some helpful and some simply noisy. Many of us like to play devil's advocate and advocate for the misunderstood enemy.

And, truthfully, I think that is awesome. My worst enemies (I hate even writing that I might have enemies!) need someone to tell them that I suck and they are great.

They need a cheerleader too.

This experience and this roller coaster of being the subject of so much discussion has reminded me of what my father told me every time I came home crying from Junior High and High School about the gossip mill and social ladders:

"Tricia, sometimes people just might not like the looks of you. And well, there is nothing you can do about it. Just hold your head up high and be a Carrington. It is all you can do. Even when they slug you across the jaw." 

#TruthTelling

Tuesday, September 2, 2014

Run, walk and bike this September for Childhood Cancer! #Journey2aMillion


Once a doctor told me that my daughter would never walk.

Lily was only 3 years old.

She was 2 years out from a cancer diagnosis. Lily had a tumor called ependymoma, that was hanging out in her posterior fossa, the back of the brain and attached to her 4th ventricle. Surgery devastated her muscle tone, coordination and balance.

Lily was only 3 and the doctor said she would never walk without a walker.

Lily is now 8. As I write this she is out riding bikes and just last week she hiked 10 miles through the
Grand Canyon and Yosemite. In July, she ran in the Color Run, her very first 5k. In June, she danced in her fourth dance recital--performing in both a ballet and a hip hop piece.

None of these feats come easily. Lily works three times as hard as other kids her age. She gets tired. She gets scared. She feels defeated. But, she always gets back up.

Lily was only 3 when she learned that the only way you walk is to walk and walk and walk and walk. You walk until your feet ache and your legs want to give out. Then you walk some more. You walk until your heart beats out of your chest, threatening to run away from you. You walk until you think you can't walk anymore.

And then you take a few more steps.

That is what I challenge you to do this September, join the Alex's  Million Mile--Run. Walk. Bike., organized by Alex's Lemonade Stand Foundation for Childhood Cancer. Join my team or start your own and begin tracking your miles throughout the month of September.  Donate to my team and help us reach our goal of $1,000. The #Journey2aMillion starts with one step--so get out there!

Together, we will reach one million miles and be that much closer to a cure.

Lily, at 3 years old, on Halloween with her therapy walker
Lily wants to be an artist who runs marathons when she grows up. Lily will walk a million miles and a million more in her lifetime. But so many children will not get a chance to grow up. Please join the #Journey2aMillion today and help us find a cure for childhood cancer.

Want to donate or join my team? Pop over to Bloggers Go Gold to join, donate and learn more.





Tuesday, August 12, 2014

#TrashTalk

I found out my "friend" was trashing me nonstop behind my back.

She was also trashing my daughter (who is 8; although I think the trash talk probably started when my kid was 3.)

This is how trash talk makes me feel:

Angry
Ugly
Hurt
Broken
Excluded
Reduced
Angry, really F$%$%$# angry

While I can puff my chest and say this "friend" is a horrible person and say I don't care what horrible things she has to say, the truth is, I do care. I care because it is hurtful. I care because I am a human being, who is just doing the best I can. I care because I would, never, ever say mean things about a child to an adult with the hope it spreads.

I care because I am nothing that woman said and I am everything she did not say. Even if someone believes it, that is their own shortcoming, not my own. My daughter is not her victim. The only victim is my "friend." She is a victim of her own horrific behavior; she is the victim of her ugly, jealous, mean words that will eat away at her.

But how do I stop those words from eating away at me too? How do I stop the insidious spread of angry, ugly, hurt, broken, excluded and reduced from gnawing away at me? It is not enough to know she was wrong. It is something to know that people have defended me and my child. It is more to know that she must be mentally ill or possessed or just a sad, sorry person.

But I still care.

I care because I cannot erase her horrific behavior, nor can I make her stop nor can I change her mind. I have no control over her. I barely can control the bubbling anger I feel.

I don't even know what to say anymore--do I lash out? Do I walk away defiantly? What do I do?

For now,  the only thing I can do, is remember who I am and know that I am everything. My children are everything. And you are everything. And as long as light out weighs the dark; as long as a twinkle of sweetness resides in my heart, we are everything.

And well, sadly, she is nothing.



Monday, August 11, 2014

Inhabiting Shock.

Lily is 7 years cancer-free. It is official.

Her oncologist told us she is a survivor.

Survivor.
Survivor.
Survivor.

A survivor.

Did my daughter really survive a brain tumor? How bizarre.

I am in shock--not at her survival, but at her need to actually survive anything. She is a child; she is supposed to "survive" the first day of school and to "survive" summer camp and "survive" her spelling test. She is automatically by default and by natural design supposed to just grow up through childhood without actually having to survive childhood, because survival is an abstract, exaggerated term reserved for silly life challenges, reality TV and, when used in its very real, dramatic meaning, it is for  adult hostages and fire fighters and soldiers.

Children don't need to survive. Children just do.

Or more truly, they should. For 7 years we've been residents in shock.  It is a weird place to inhabit--the place where your child survived cancer, but you are still in shock at all of it--shocked by the diagnosis, shocked by the survival, shocked that others are still being diagnosed.  It is a place of joy--Lily is alive! It is a place of fear--what if it comes back! It is a place of fighting--She will walk and thrive and survive. It is a place of sorrow--children are dying everyday.

It is not a place where anything is clear. It is all a little fuzzy, framed by a protective layer of shock.

It is the feeling that numbs me and keeps me getting dressed each day; it is the sensation that keeps me feeling separate from the outside world, as if there is an electrified force field that shocks me to take three steps back. It is the the invisible rope that pulls me away from psychotic oblivion, when I get too close to falling in. It is the feeling that brain tumors in babies must be a mistake, must be somehow not-quite-real, driving me to work until my fingers are numb and my voice is hoarse to erase the knowledge of it all,  because there is no possible way that God would allow any of this to part of his plan.

It is the shock that I lived to tell the story and the shock that Lily will live to tell her own.

Shock is the place I inhabit everyday--a place where joy and sorrow exist; but before I feel either too fully, the shock jolts me back to the even point to protect me. It is the weakness that threatens to break through the shock.  Whenever I am just on that pinpoint of breaking down, of really analyzing and digesting everything that has happened, my old pal shock knocks on the door and soothes me.

It is shock that drove me on autopilot seven years ago to follow treatment protocols and search for physical therapy, because that is what I had to do. Shock wraps me up in a warm blanket, asks me to stop trying to understand it all and to stop thinking and just to do it all until I beyond weary, only to do it again and again.

The truth is, I don't ever want the shock to wear off. I don't want to feel the full weight of what happened and what is happening out there. I don't want to know. I don't want any of it. I'll drink my shock with a side of joy and a dash of anger. I'll take my shock straight up. I'll live in shock for as long as humanly possible, because to really live in the world where children get brain tumors and have to struggle to survive requires the kind of strength I simply do not wish to possess.

Tonight, as I know I will thank God because he has blessed my child. I will celebrate, but not fully because I am shocked that I have to celebrate.  I will sit and be still, cradled by the misunderstanding of it all,  knowing that maybe one day I will be strong enough to understand and understanding that maybe I don't want to.


Tuesday, July 22, 2014

There was enough toilet paper. . .but someone broke an arm.

I left the home and the state of New Jersey for approximately 6 hours and someone broke an arm.

Literally.

The arm is actually in a cast; a cute, royal purple cast.

A cast. 6 hours. Broken arm.



The broken arm occurred in a strange, yet, totally predictable couch jumping incident. Apparently, all the cushions were removed from the couch to create a safe landing pad. During Chloe's last and fateful jump, a cushion shifted leaving a small space between the cushions, jeopardizing the stability and safety of the landing pad.



The result: the poor kid landed on her hand/wrist directly on the floor after an epic corkscrew, triple combo living room couch jump that made her a contender in the great-mommy-is-in-another-state-olympics.



So there you have it: the lesson is that I clearly need to source a couch with cushions that are not removable,  figure out how to pad the walls and the floors,  and consider NEVER LEAVING THE HOME AGAIN.

I also need to update my pre-escape questions with the following:

1. You do realize that your bones can break, right?
2. You are aware that jumping in any fashion whether with a rope or a trampoline or a makeshift couch cushion landing pad is strictly prohibited, right?
3. You will not break your bones while riding on the dog because you are bored with walking, correct?
4. You are aware that my physical absence does not mean I am not watching and their may or may not be cameras hidden places, okay?
5. And when you ignore all rules and regulations completely, resulting in broken bones, bloodied knees, holes in wall and fires in the hole, please know you are shaving years off my independent living and you must agree to apply mascara to my lashes daily while I am living at the "rest home," agreed?

On the bright side: at least nothing caught on fire and we still have a full can of glitter hairspray. For now.

Did you miss the prequel to this post? Never fear, here it is:

Is there enough toilet paper?



Thursday, July 17, 2014

Is there enough toilet paper? Heading out to Blogger Bash #BBNYC

Blogger Bash
My husband is a frequent business traveler and being the sweet, loving man that he is, he always asks before he goes:

"Will you be okay?"

It is the sweetest thing. I always say, "Yes," because really, I am quite capable of keeping myself and three children out of jail and avoiding such situations as burning the house down, getting lost in the woods and starving.

He never asks:

"Is there enough toilet paper?"
"What will you eat?"
"Do the children have underwear?"
"Who will watch the children?"
"Is there enough wine?"
"Are there any diapers?"
"Does everyone have rides home from school?"
"Did you cancel all activities?"
"Is there heating oil?"
"Is the cable bill paid?"
"Did you hide the matches?"
"Is homework completed?"
"Is there dog food?"
"Do you have milk?"
"Do you have car keys?"

I suppose his simple question reflects a high level of trust in my ability to maintain minimal order and safety.

And while I trust my husband completely, I don't really trust my children or the universe to keep spinning in my absence. There is just so much to worry about.

Like the babysitter lighting a candle and the baby putting a magazine in the candle, catching it on fire and the girls attempting to put the fire out with glitter hairspray.

It could happen.


On the rare occasions I escape--whether for ten minutes or ten hours--I never ask "will you be okay?"--because really, I am certain no one will be okay and everyone will run around without underwear eating leftover Easter candy while drinking water and using baby wipes as toilet paper resulting in a major plumbing emergency that no one will be able to handle because the home phone is missing and we forgot to pay Comcast, so they can't even call a plumber anyway, let alone send me a text message because all cell phone chargers are missing and in the end the children will be taken away, require major dental work, grow up believing that underwear is optional, be adults who chronically misplace their car keys and later be in therapy discussing the one time their mother left them and they WERE ABSOLUTELY NOT OKAY.

This afternoon I am heading out to Blogger Bash 2014 (WHOOP!!) and hanging out with some of my favorite bloggers and rubbing elbows with amazing brands all the while chronically worrying if my children are doing the shimmy shake or using socks to wipe after they pee. However, I can't wait to escape and really, they will be okay, right?

#BBNYC or BUST!


Tuesday, July 15, 2014

Chemo4Cam: Help Save a Little Girl's Life

Campbell is eight. There is so much about Campbell that reminds me of my own 8 year old. She loves American Girl, dancing and horses.

Campbell, like my daughter Lily, is also a cancer fighter. Campbell has been fighting recurrent ependymoma for most of her life. She has endured nine major brain surgeries, endless clinical trials and is now slated to begin one last chance chemotherapy treatment.


There is no known cure for recurrent ependymoma; but the doctors are trying and they are fighting with Campbell to save her life.


Campbell's insurance company, Anthem Blue Cross, has denied coverage of one chemotherapy medication that has shown success in killing ependymoma drugs. Campbell is declining. She was set to begin treatment tomorrow, July 16. Right now, everything is on hold and Campbell's life is in the balance.


Campbell deserves this chance to live. Her mother Robin deserves this chance to keep fighting for her daughter's life. These are people whom I love, adore and pray for everyday. Please sign the petition, share, tweet and scream from the rooftops. Anthem Blue Cross NEEDS to approve this treatment.

Campbell deserves it.


In the event Anthem Blue Cross does not approve the treatment, Campbell's family will need to pay out of pocket. Please consider supporting their GoFundMe campaign and helping Campbell get the treatment she needs NOW: http://www.gofundme.com/ble5ns

Here are sample tweest:


Please sign & RT: Help 8 year old Campbell get the chemo she needs NOW. Sign this petition;


Please help Campbell get the chemo she needs NOW! Donate: http://www.gofundme.com/ble5ns #Chemo4Cam