Thursday, May 31, 2012

Those words.

Lily has never said the word: "cancer" and she has never said: "brain tumor."

She won't. She told me she does not like those words. Instead she is okay to talk about heroes and Alex's Lemonade kids. But, those words must taste like poison on her lips.

We've always respected Lily's wishes and we've always checked in before sharing her story. She is happy for us to share it; for us to speak those poisonous words; because for whatever reason she will not or cannot.  Lily is just a regular kid. To Lily, she is just like her classmates.

And we are happy for that.

The one thing Lily will say, is Lemonade. She loves her annual Lemonade Stand. And tomorrow, we will share the stand with her entire elementary school. Lily cannot wait for her friends to see the stand; for her friends to taste the lemonade and in her own words: "To share Alex's Lemonade and my own story without saying those words."

That is what makes Alex's Lemonade Stand Foundation for Childhood Cancer so amazing.

It is a chance for all of us to talk about cancer without talking about MRIs and surgeries and diagnosis and pathology and chemo and radiation. Sure, we mention these things when we share our story. But, the lemonade is always in our hand to remind us of why we are here:

To drink hope.

It is that hope that Lily shares with her friends each June. It is that hope that Lily sees when her friends fight over pouring lemonade. It is that hope that helps each and everyone one of us wake up in the morning and continue to fight for cures.

Thank you. Thank you for all your donations, support and love. But most of all, thank you for sharing in the hope.

Lily's 4th Annual Stand is June 9, in our front yard. Come and celebrate. Or donate online:
http://www.alexslemonade.org/mypage/80920





No Kid Hungry: Tell Congress!

My children have never been hungry.

They might tell you different--remembering that time I refused to get them a donut at 7 p.m. on a Tuesday, because they wanted it. Or when they had to have an ice cream cone or they would starve at the beach.

But, my girls have never gone to bed without enough food or began their day without breakfast. There is always enough food on the table. My pantry overflows. My garden is full. We always can eat.

Sadly, one in five children in the United States do not have enough to eat. These children could live in my neighborhood. I am sure some of these children go to my daughter's school. And they are hungry, truly hungry.

No child should ever go to bed hungry. No mother should ever fear for her child's health because their just is not enough money to buy food.

This Spring and Summer, members of Congress are working to reauthorize the Farm Bill, legislation that provides funding for the Supplemental Nutrition Assistance Program (SNAP). Drastic cuts to SNAP are on the table in the Farm Bill and nearly half of all SNAP participants are children. If Congress cuts funding for this poverty relieving program, it will affect millions of children and families, leaving them even more vulnerable to hunger.


SNAP helps struggling families buy more food and fresh vegetables to feed their kids. It also provides nutrition education to families. The funds cuts SNAP is facing are devastating--millions of Americans', mostly children, could loss access to SNAP benefits, forcing them to go hungry. 


SNAP also provides important economic benefits to communities across the country. For every SNAP dollar spent, $1.79 is returned to the economy. 


The are 46 million Americans who rely on SNAP--half of these Americans are children.

What you can do:

  • Visit http://nokidhungry.org/farmbill to send a message to Congress to reauthorize the Farm Bill and protect children
  • Take the Share Our Strength, No Kid Hungry Pledge and join voices across the country who are fighting to ensure our children never go to bed hungry. 
  • Tell your friends and family to join the fight for our nation's children. 




Tuesday, May 22, 2012

Vinyl seats and a side of Christ.

It's been a while since I've written about Jesus.

I know Jesus makes some people uncomfortable, much like a wet bathing suit or sticky vinyl seats on a hot day. But both Jesus and vinyl seats exist, so everyone will just have to live with it.

I am not sure why Jesus invokes so much discomfort. I can mention Buddha in my yoga classes and get lots of great conversation going. When I mention Jesus (at a regular class), people avert their eyes.  What is it that is so uncomfortable about being Jesus-y?

Who knew? Two Jesuses on one vinyl seat. 
I have a theory that so many of us, those raised in the United States, struggle with the idea of Christ because He was a very real man. We've all seen the pictures--long hair, a beard, eyes, nose, mouth. Christ is not exotic looking like the Buddha. He looks like a young Hippie. Like someone we've seen at the grocery store.

He was a man, but with a twist: we are to believe that this Hippie from so long ago was able to perform miracles and then He did the ultimate: raised from the dead and ascended into heaven.

It is all pretty extreme. And we are reasonable people. We don't believe in fairy dust or unicorns. We scoff at miracle products on infomericials; we don't believe anything we can't see with our eyes; and we certainly don't believe that a dead person could live again, in His whole, formerly-dead body.

Because that is completely ridiculous. That is the stuff of delusional people. That is grounds for committal.

So, even some of us who identify with being a Christian sometimes glaze over the sticky little detail of Jesus Christ.  And some of us choose to believe nothing or something else entirely, which is absolutely fine with me, by the way. I am not much of a converter: I am more of a live and let live kind of Christian.

But, I am a Christian and by saying that I have to take one gigantic leap of faith and believe that Christ did die on the cross. And then He rose, in His full body and spoke to people, appeared to them as a man in a body. Not a zombie. Not a ghost, but a whole person.  And then, He ascended into Heaven. His full body. All of him. Every last bit of him elevated to sit with God the Father. In Heaven--the one place I cannot find with my GPS.

And I believe every last bit of it.

I believe in spite of it being unbelievable.


Monday, May 21, 2012

When life gives you lemons. . .you make Alex's Lemonade!

Lily, today, reaching for her goals!


When my daughter was first diagnosed with a brain tumor, I knew nothing about Alex's Lemonade Stand Foundation for Childhood Cancer (ALSF). Then one morning in June while she was upstairs at the Children's Hospital of Phildelphia in the PICU recovering from brain surgery, I went downstairs to buy a cup of lemonade.

CHOP was buzzing with excitement--it was the ALSF annual Lemonade Days.   I, however,  was in a bad place. The day before Lily had complications during a procedure. I hated the world. I hated everything and everyone. I was spent. 
Then I heard Liz Scott speak. I only remember one word that Liz said:
Hope.
Hearing this amazing woman and mother, who lost her child, tell me to have hope, saved me. 

My daughter Lily is a 6-year-old brain tumor survivor. She was diagnosed when she was 14-months old, after weeks of throwing up. Her pediatrician kept diagnosing a GI bug and a bladder infection. Finally, we begged for more answers and we were sent to the emergency room at the Children's Hospital of Philadelphia.

Within 30 minutes we had our answer: a brain tumor. 

Those are two words, you never, ever want to hear as a parent.


Lily. After brain surgery.


Lily has endured multiple brain surgeries, seven weeks of proton radiation and continued therapies to help improve her motor skills and strengthen her muscles. Brain surgery damaged Lily's overall muscle tone and coordination. Therapy and hard work has brought Lily full circle. The little girl who once could not walk, now runs and tumbles and dances.  She is a shining beacon of hope and strength and love. 

But we know that Lily's battle is not unique.  Everyday, 46 children are diagnosed with childhood cancer. Everyday, 46 mothers and fathers learn that their child will begin the fight for their lives. Seven children die everyday at the hands of childhood cancer. 


46 children is 46 too many.  The suffering has to stop. 

It because of these children that our family holds an Alex's Lemonade Stand to support ALSF every year.  For the past four years, our family has hosted a Lemonade Stand in our front yard and online to raise money for Alex’s Lemonade Stand Foundation for Childhood Cancer. 

Childhood cancer research is consistently underfunded and under researched. But ALSF is working to change that. Since 2004, the foundation has made a major impact--raising over $50 million for research.  It all started with Alex--a little girl who was really sick and really wise. Alex knew that every penny counts and every donation adds up. 

This year, our family aims to raise $10,000 for a cure to all forms of childhood cancer. It is an enormous goal--but it is one we hope to reach with the help of kind and generous friends. 


Every donation--whether $5 or $50 counts.  When you buy a cup (or 100 cups, please!), you will be sipping in the beautiful stories of some of my favorite people in the world, my heroes. In honor of all those children, mothers, fathers, brothers and sisters who fight, have fought and will continue to sell lemonade for their friends, until cures for pediatric cancer are found, I ask, I beg you to raise a glass to these amazing blessings. 


Together, we will beat childhood cancer, one icy cold, sweet cup of lemonade at a time!


To donate to Lily's stand: http://www.alexslemonade.org/mypage/80920

To donate in person, come to the stand on June 9, in Lily's front yard in Lindenwold, NJ. There will be loads of great activities for the kids: face painting, a sour lemon face contest, moon bounce, crafts, raffle prizes and much more! 



Saturday, May 19, 2012

46.

Lily is healthy. And at five years post-diagnosis, we are starting to feel pretty good that she will stay that way.

But everyday, 46 children are diagnosed with cancer. Ten of these children will be told they have a brain tumor. And on May 16, 2007, Lily was one of those kids.

Before her diagnosis, I never gave much thought to childhood cancer. After all, odds were in our favor--the odds are in every child's favorite. Childhood cancer is rare, very rare. But then it is at your doorstep and in your child's brain and suddenly it is not so rare.

When it comes to sick and dying children, odds do not matter much.

These 46 children are children you see at the playground. They are classmates with your children. They are your neighbors. They are on your son's soccer team and in your daughters Daisy Troop. They are real people. And they might be your child or nephew or niece or grandchild.

That is the insidious, sneaky thing about childhood cancer. It does not discriminate. Unlike some adult cancers, childhood cancer is not something you can prevent. Their young little bodies are perfect--until something, for some reason decides to go terribly wrong. And no one knows why.

Research is needed. Lots of research, which will cost lots of money. Children need to stop dying. Children need to stop suffering. My daughter is alive--but I will be damned if I don't do something to make sure every mother can say the same thing.

So even as the years since Lily's diagnosis grow--and Lily, my strong, gorgeous miracle, goes stronger and stronger--I won't forget. And I won't stop fighting.

Because 46 children is 46 too many.

Join our fight and donate to Lily's Lemonade Stand for Alex's Lemonade Stand Foundation for Childhood Cancer. Any donation, whether $5 or $50, will fund life-saving research.

To donate online:
http://www.alexslemonade.org/mypage/80920





Friday, May 18, 2012

May 16

May 16 has come and gone.

And now Lily is officially five years post diagnosis--which is a wonderful, beautiful thing.  She will never be declared "cured," but five years is five years.

The anniversary of Lily's diagnosis is always marked with a certain tentativeness. We don't talk about it at home--not directly, not in explicit words. We don't have to. We all know what it is. But we never forget it--it is the same day as my Dad's birthday.

And this year, my father is dead. There was no birthday celebration. There was no toast to long lives for my old man and Lily. None of that. It all cast a new shadow upon on the day.

I still don't know how to feel, exactly. And I don't want or need anyone to tell me how to feel. While, I appreciate all the love and support--the reminders that my father is looking down on us and is some sort of guardian angel to Lily and the cheerleading that we need to focus on how great Lily is and how far she has come--are empty and aggravating and slightly irritating.

I am sorry. I have to be honest.

The fact is: I know my Dad is in heaven. I have faith he is somehow still with us--even if just in memory. While in my dark moments, I beg my Dad to intercede on my behalf and keep my children safe--I know that the only one who can intercede on my behalf is God.  I always prefer to go straight to the top man.

And the fact is: I am more positive and more filled with hope when it comes to Lily than anyone else. I have no choice.

I stood in that room on May 16, 2007 and heard the words Brain Tumor. I stood there and listened as a neurosurgeon told me Lily would have surgery at 1 p.m. on May 17. I was there. I told the doctor to go to hell when he said Lily would not ever walk without her walker. I've spent hundreds of hours in physical therapy, occupational therapy and every therapeutic activity you can think of. I've massaged my daughter legs when they've cramped from too much work. I explained to other children why Lily does not walk like they do. I've let my young child fall on the ground, so she would learn to stand back up. I've pushed her into dance and gymnastics with "normal" kids--so she could learn to work with her body and feel free to fly and dance and dream. I've held her hand the hundred times she has been sedated for surgery, radiation and MRIs.

And I would not have done any of this if I did not have hope. There is no point in fighting the war, if you don't believe in your heart you will win.

That is hope.

I did not do any of this alone. If you are reading this, you were probably standing right along side of us--or you are now. You gave us strength. You give us strength. With your strength, we will survive.

Happy Birthday to my Father, who told me to pray until my knees bled on May 16, 2007 and cried with me on the phone. His tears showed his strength.  To my Lily--I always believed that you were diagnosed on your Grandpop's birthday, so we would not forget the day your life was saved.






Monday, May 14, 2012

Nap. I dare you.

In an unprecedented move, I took a nap this afternoon.

Both children were awake. I think they were eating potato chips. I know they were watching TV (Lily knows how to work the TiVo remote; which is a blessing and a curse). The dog was attempting to eat something out of the recycling bin.

And I was feeling bone tired.

Before you ask if I am ill or depressed: I am neither. I was just tired. We ran for 48 hours straight this weekend from charity walks to soccer games to gardening to barbecuing to church to lunch or beaching to dinner. It was a weekend filled with joy and empty of sleep.

By 4 p.m. Monday, my energy was gone. Gone. I thought about coffee or a few hours of vigorous sun salutations. I thought about standing outside in the rain. But, what I wanted was my pillow.

So I snuck away into my bedroom and slept. For 40 delicious minutes. I did not tell my children I was resting. I did not even shut the door. I just laid there, on top of my covers and some laundry that had been dumped on the bed and slept like a homeless person.

It was delightful.

When I woke up, the house as still standing. Lily had eaten an entire bag of potato chips and Henry, the dog had consumed half a tin can and Chloe, well, she was naked and holding a bag of potato chips.

And I was happy.

So, go. Nap. I dare you. Don't tell anyone. Don't plan it. Just do it.


Friday, May 11, 2012

Boobies. Boobies. Boobies.

Oh, Time magazine, how I had forgotten you existed outside of outdated copies I flip through at the dentist's office.

By now, you've seen it, the cover with the lady in skinny jeans breast feeding her tall 3-year-old, while he stands on a chair.

Is that actually how she does it at home?  Does she have a whole series of adjustable height chairs to make allowances for growth spurts? Just how long do they both stand? (No one seems to be able to tell me).

And how will that 3-year old feel when he is in junior high and some other kid whips out a copy of Time magazine and makes the connection that the pimply 13-year old who is his lab partner was also photographed with his mother's boobie in his mouth?

But anyway, back to the issue at hand, boobies.

It is always about the boobies. It is about the boobies when we are 12 years old and get our first training bra. It is about the boobies when we stuff that training bra to wear a strapless dress to the school dance. It is about the boobies when they really big or really small or in between. Spring Break is boobie central with bikini tops and flashing and wet t-shirt contests. We worry about cancer in our boobies. We spend hundreds and thousands of dollars and hours finding bras for our boobies. And of course, we fret over how gigantic our boobies get when pregnant and then whether or not to breast feed.

Boobies. boobies. boobies.

I breast fed both my girls (against all odds, I might add. They were preemies. The breast pump nursed before my daughters). And yeah, I believe that every mother should breast feed, because well, that is what your boobies are actually for. And yeah, I also believe that if you don't breast feed you are an amazing mother as well. Because you feed your babies--with food and love. Just like I did.

And even though I breast fed, my boobies have nothing to do with how my daughters will remember me as a mother. They will remember that they were fed and loved and supported and yelled at when they acted like lunatics. They will remember all the amazing things we've done together. They will remember all of this and never think much about my boobies.  As an adult, I give very little thought to my mother's boobies. Yeah, she has them. Good for her. And yeah, she breastfed me, good for her too.

I am mother enough. And it has absolutely nothing to do with my boobies.

We are all mother enough. Sleep with your kid until he is 21 and married. Breast feed your daughter until she is old enough to lactate herself. Wear your husband in a baby bjorn. Carry your bull dog in a sling.  Do whatever you want. But, don't judge me. Or yourself. Or your neighbor.

And seriously, don't breast feed standing up, I am certain it is bad for your back.






Wednesday, May 9, 2012

Get Married, Don't Hate.

Since my email is broken, I thought I'd write about gay marriage.

I know I am a little late to the discussion. But, here's the truth:

God loves us all the same. He does not care if we white or black or purple. He does not care if we like blondes or red heads or boys or girls. He does not worry himself with who we take to the prom or if we wax our eyebrows. And frankly, while God prefers us to be God-loving, neighbor-loving, honest, sinless people, He knows as well I as do: That ain't the case.  God knows we are disasters as people.

Being Gay, however, is not one of those sins or disasters. How could loving someone ever be a sin? Love is a beautiful thing and you know what, I don't know that God even particularly cares who we love; just that we love.

God has a lot going on.

So, of course Gay Marriage should be legal. Love is love. Marriage is marriage. Marriage is also a legal state that provides two committed individuals certain rights and protections. It is for people who love each other.  Two people. A man and a woman. A man and a man. A woman and a woman. Just people.

I have no idea why North Carolina thinks they can hate and still claim to be part of the Bible belt.  Frankly, if you don't support gay rights or gay marriage or the idea of being gay, then don't be gay. Don't go to your cousin's gay wedding.

But, don't you dare tell two people in love that their love is not good enough, that their relationship is not worthy and that God loves them any less than He loves you.

Because, my friend, that is a lie filled with hate and ignorance and spite. And God does not abide hate.

God loves us. He loves churches filled with joy. I am pretty sure He loves a good wedding. No matter who is standing at the altar.


Tuesday, May 8, 2012

Not Different.

Lily told me today that she has no affiliation with cancer or brain tumors.

And yes, she used the word affiliation. Because, she is Lily.

I asked her: "But Lily, you know you had a brain tumor, right?"

I am very honest with her. It is her diagnosis, after all. It is not my own. She has to know, so she can be in charge of her own health.

Lily said: "Yes, I know. But I am not a hero. I am just a kid. And everyone else who has cancer or brain tumors is just a kid too. And it makes me feel uncomfortable to talk about it all. Because I am not different."

And as usual, my wise little Lily taught me something. She is not different. None of those kids who are sick and fighting for their lives are different. They are all just kids. They were kids before cancer and they are kids during cancer. The survivors are kids after cancer. Kids--46 a day--diagnosed with a deadly disease.

Just kids. Not different than yours and not different than mine.




Tuesday, May 1, 2012

Aware

This month, I wear gray. And I also wear pink, for preeclampsia. 
Sometimes I feel like a total charity case--like at a playdate when women are sharing birth stories or when they are hemming and hawing about their child's late-ish walking.

Nothing brings a room down faster than: "oh, I had emergency c-sections. and yeah, the girls were super early and spent weeks in the NICU. Oh and Lily did not walk until 3 1/2, there was this small matter of a brain tumor, surgery and radiation."

It is the most isolating and troubling part of my social existence. I cannot even pretend to be normal.  I am not a cry baby, but fear I appear to be. And I can't just shut up and move on; I am much too much of a chatty cathy to pretend like everything is all white bread and stuff.

This awareness of things like preeclampsia and brain tumors and cancer and IEPs and physical therapy has bought me to my knees. It has also opened my eyes to other people's struggles in a way I never understood before becoming a mother. Yes, I don't know the first thing about autism--but I can relate to the toll it takes on motherhood and social lives and families. And no, I have no idea what it is like to battle breast cancer. But, I can understand the fear of dying and leaving your children.  And yeah, Lily has been healthy for almost five years without a recurrence, but I can put myself in the shoes of the mothers watching their children battle cancer for a second time.

If I don't tell people what I know; what I am aware of; all this awareness is useless. Awareness brings funds for cancer research or research into the causes of preeclampsia and better treatments for preemies in the NICU. But it does something more:

It makes everyone aware that life is not a cake walk and it makes playdate conservation a little less isolating. It brings understanding and empathy and compassion and sisterhood to dark, lonely places.

May is Preeclampsia Awareness Month. May is also Brain Tumor Awareness Month. It is also the national awareness month for 31 other diseases, health disorders and conditions. There is a lot of nasty stuff out there--that I never even heard of.

But, maybe you have and maybe you've experienced. Maybe you've lived it in a way that people need to know. So, this May and then in June, July, August, September, October, November, December and the rest of the months, share your story. Tell someone. Open up with your story and build awareness. It is awareness that saves lives and makes lives a little less lonely.