Monday, April 30, 2012

Yeah, I prayed over the phone.

I did two really revolutionary things today:

1. I prayed over the phone with a friend (Can you say, Bible-Banger?!)
2. I prayed before Lily's IEP meeting (If you are familiar with IEP meetings, prayer seems like the only viable counter measure)

I know praying over the phone may sound really weird and maybe you are thinking that I have finally become that insufferable, Jesus-y church lady, who runs around saving heathens and planning church bake sales and praying in the grocery store.

I should get a headset. For next time. 
But, it isn't weird. And I have always been that insufferable, Jesus-y church lady; (you just haven't noticed that you've been saved!)

My good friend Stacey suggested we pray this morning. I had just told her about my IEP-anxiety, rage and generally bad feelings. We have a big IEP (Individualized Education Plan) meeting once a year for Lily. It is a time when we sit down with her teachers, support staff, the school nurse and a member of the Child Study Team to analyze all of Lily's progress and lack of progress. It is a hard time to be a mother--I have to check my ego at the door. And I have to stand firm in what I believe my child needs; while keeping an open mind to her teachers' thoughts.

Lily has been analyzed by developmental specialists her entire life. She was a 29-week preemie; so we have post-NICU developmental follow-ups. And then, of course, Lily had a brain tumor and subsequent brains surgeries and radiation. Following surgery and treatment, therapists would classify Lily on a their developmental scale. I loved hearing that my 15-month old, who just battled a brain tumor, had the motor skills of a 5-month-old.

I mean, I loved it. I loved it so much that it made me want to puke and scream and rip my hair out. In Lily's medical file, there are many evaluations that we ripped up or spots that are redacted with a black Sharpie. To me, Lily was not a 15-month-old who motored at a 5-month-old level. Lily was a 15-month-old, who just had her brain cut open and a tumor removed.  How the hell was she supposed to move?

At school, IEPs follow similar levels and patterns. It is maddening as a parent to have your kindergartner compared to a 4 year old. Or to worry that all the other kids are writing at a Level 7 and your child is at a Level 4. All of these constructs are bullshit--and maddening: people are not levels or grades or developmental ages. People are people; children are children.

So, today, I woke up with a giant chip on my shoulder. I kept thinking, maybe today they will compare Lily to a Pre-K student! Or maybe today they will remind me again that she has ataxia. Or maybe we will spend 45 minutes discussing the importance of coloring in the lines (by the way, coloring in the lines is not important. ).

And of course I took my cause to the phone; to Stacey, who reminded me, as Joyce Meyers once said: to take it to the throne.

And we prayed.

Prayer, as I've noted before,  is not magic. We did not pray for Lily's IEP to show that she was a genius or for some sort of magic shift in the policy and language that plagues IEPs. We prayed for understanding and peace.

And I got it. And I lost it, because I had a few hours before the meeting.

Then I prayed again in the car on the way to the meeting.

And I got it again.

And you know what: I had a positive attitude. I listened and I asked. And I saw, truly, for the first time, how much the teachers adore Lily--how much they love all their students. I asked questions on how to do things better and I was honest about my own struggles as a mother (flash cards, sight words and being on time). And I found advocates and friends.

They were always there. I just was not listening or looking. I was so wrapped up in my own mind; that I did not see what has always been sitting right there.

So, yeah, I prayed over the phone. And I will probably do it again, when I call Stacey to thank her for reminding me that the right time and place to pray is now.

P.S. Lily, as it would seem, is in fact a little genius, who adores math and hates flash cards.  She is also working on a running long jump. Pretty damn good for the kid who didn't walk until she was 3 1/2.

Friday, April 27, 2012

Rejected.

I am often rejected.

 It comes in many forms: an unanswered email, an unreturned phone call, a polite thanks-but-no-thank letter or my favorite (I took some editorial liberties):

"Thanks for your submission. We get like a million submissions, because we are so popular. And we know everyone wants us. And we know you are probably on pins and needles waiting to hear back. The thing is, we are busy, so busy being fabulous, that we can't even bother to say hello. So if you don't hear, just assume we don't like you, because chances are, we don't." 

And I also particularly love this one, which is what I woke up to this morning:

"I had a meeting with my friend last night and even though I gave you the job, well, my friend is convenient. So sorry for the short notice. I will keep you mind for when I need more writers. Have a super day." 

I've often heard this:

"This is my job. And I need the money, but I cannot pay you. I know you understand. You are an artist. You write for joy; not money. So, I will pay like $5 for 1,000 words? That works, right?"

If only joy paid for dance lessons and pediatrician visits.

And a few times:

"Sorry I have not returned your call or managed to pay you for your services. I've been busy--so busy. I know you understand."

Indeed. I've been busy stalking you for my paycheck.

I've hit walls of rejection in the PR world too. Like when I was pitching a story about a doctor that raised thousands and thousands of dollars by donating eye exam fees to a charity that gave blind, impoverished children glasses, a super professional reporter at USA Today told me:

"Great story. Super Sweet. Too bad, I hate children."

That reporter covered the international parenting beat.

And of course, there is personal life rejection, like when everyone is invited to a social event and I am not.  And if I even mention I felt left out, I hear something like:

"Well, you cannot be included in everything. SORRY."

Yep, I cannot be included in everything. And I don't have to be included in anything. Rejection is part of the game--it is a power move to reject. I just wish those in power would be, well, a little more human. I find the rudeness impossible to abide. But, I still find myself biting my tongue.

But no more. Here is my rejection letter to the rejection letter:

"I do think y'all are fabulous. And I want you to think I am fabulous too.  And if you don't, I will be forced to poke fun at you. It is my only defense. And then I will probably invite you to dinner, because I am an old softie. So, dinner on Saturday?"




Thursday, April 26, 2012

So far this week. . .

I sort of think everyone has interesting stories to tell.  Even those people who seem boring are interesting, when they are rambling in a boredom-inducing-monotones about humdrum life events.

Because, what happened to make them so boring? There was to be a story. No one is born dull around the edges.

And it should come as no surprise to you, that I find my own life to be endlessly fascinating, such is my blessing and my curse.  Since I cannot seem to get a coherent entry together, here are my top ten items of note so far this week. . .

1. Today is Bring Your Kid to Work Day. My old man used to bring me to his office at Culligan (he was the original Culligan Man!) where he worked in sales.  Since I was going through a stage in which I wanted to be a hair dresser/journalist I was allowed to give pretend haircuts to all the other salesman with children's scissors, until the day I accidentally cut off a chunk of someone's hair. Then I was just allowed to play with typewriter.  Lily is off on her second- Bring Your Kid to Work Day with Mike, an engineer.  Lily has no idea what an engineer does; but Mike has convinced her that he is solely responsible for the safety of the world's ice cream supply.  Lily now wants to be an artist. Or a chef. Or maybe a grandmother. Anything. As long as there is ice cream.
Future CEO

2. Chloe is addicted to the game of Memory, only because she wins every time. I feel we have a future CEO on our hands, who will make you do the same thing over and over and over and over again just to remind you of her dominance and your failure.

3. Yoke is up over 10,000 pageviews. When I first started writing in Yoke, way back in 2009, I was lucky if three people a month looked at it. I still don't think my family reads it, because they still speak to me. I know some friends read it, even if it is to make sure they are not mentioned. But, I know there are oodles of non-friends reading it. Which, makes me feel like I have a whole gang of stalkers and clearly means, I have arrived! Finally.

4. I went indoor rock climbing on Tuesday with a bunch of near complete strangers. It was random and risky (strangers were holding the rope that was holding me up in the air). And quite possibly, one of the strangest things I've ever done socially. But, I loved it. And I was invited, so I went. And I met wonderful women, who reminded me that I should continue to talking to everyone and having an open heart.  People really are glorious!

5. Henry the dog has definitely gone at least a foot this week. I just know it.  I am currently shopping for a home on Birdwell Island, so he can run with Clifford.

6. I have written exactly ZERO words for The Book. ZERO. But don't tell anyone, thanks.

7. One of my favorite authors, Mary Kay Andrews, responded to my tweet. If you want to know what she said, follow me on Twitter (TrinitasYoga)

8. I kicked off Lemonade Season by speaking to a group of college students at Camden County College. It reminded me how important the work of Alex's Lemonade Stand is to other volunteers and how the message reverberates beyond childhood cancer. No matter what tugs at your heart: you can make a difference. So go do it, now.

9. I am appalled by that teacher and teacher's aide in Cherry Hill and the apparent abuse of a non-verbal student. But, I am not appalled by the American education system and I am not scared to send my children to school. Bad people suck and their poor behavior, overshadows all the good stuff that happens--it makes us all suspicious and weary and angry.  I don't want my children to grow up weary or with an axe to grind.

10. This is a hard time of year for me, as I relive both NICU stays for both my girls and Lily's brain tumor diagnosis, surgeries and treatment. It is also nearing my Father's first birthday post-death. I am definitely on fragile ground.  I started writing, in my head, a one-act monologue called: "A Conversation with a Brain Tumor." It is really weird. The Brain Tumor does not speak and I just yell a lot, while it sits there getting fatter and fatter. This may be too much information. But, it is the only axe I have to grind. And it is the one object that refuses to respond to my demands for more information--why did it swing by my family in the first place?

Wednesday, April 25, 2012

It Ain't No Cabbage Patch: The Second Time Around

Chloe was born at 31 weeks. I spent most the pregnancy doing one of three things:


  • worrying and praying
  • going to the perinatologist 
  • on bedrest, with my laptop, trying to maintain my full-time consulting job

Such is the life of a mother who had preeclampsia once. The knowledge of my risk for a second bout of preeclampsia was extremely instrumental in maintaining my health, Chloe's health and my pregnancy. But it came at a price:

My sanity.

My second little miracle; when she was just about 1. 
Which, I quite nearly lost, if it was not for the resources offered by the Preeclampsia Foundation. I spent hours on the message boards and in the forums and reading all the amazing literature I could. The women in the forum were my lifeline: when I felt guilty for wanting and having a second pregnancy; they reminded me that no doctor knows if preeclampsia will strike again. When I panicked before my weekly perinatologist visits (which included testing for everything under the sun), they reminded me that they were panicking too. I found a community that understood and made me stronger, because we had each other.

This is why I am walking in the Promise Walk this year. The Walk will raise money for preeclampsia research (there is no known cause or cure, minus immediate delivery of the baby). It will raise money for preeclampsia education--making sure women know the signs and their risk factors for preeclampsia. And it will fund hope and sisterhood--two commodities that are priceless.

Someday, when Lily and Chloe decide to start families of their own (and they will, I want grandchildren in thick loads.), they will have to enter their pregnancies knowing that their risk of preeclampsia is high--because of their mother.  But, I will also be able to give my daughters hope--maybe there will be a cure; but there will definitely be a community of women waiting for them. Women who will listen and share and send their friendship.

This is why we walk: for each other.

"It ain't no Cabbage Patch" is the third of a series of articles on preeclampsia, a life-threatening disorder that occurs only during pregnancy and the postpartum period. Preeclampsia and related disorders such as HELLP syndrome and eclampsia are most often characterized by a rapid rise in blood pressure that can lead to seizure, stroke, multiple organ failure and death of the mother and/or baby. 

Join me and my team LilCoCo at the May  12  Promise Walk to the benefit the Preeclampsia Foundation in Challenge Grove Park in Cherry Hill, NJ. 

Monday, April 23, 2012

Barefoot in North Philly

At some point Friday afternoon, Chloe was running around barefoot in North Philly.

No less than thirty strangers, mostly Temple students or college employees or rainbow-brite clad BassNectar concert attendees alerted me to this development.

Because obviously, I did not notice that my three-year-old was running around shoeless. Obviously, the size 8 Dora the Explorer sneakers in my hands were a fashion accessory (because clearly we were all headed to rock out to BassNectar or whatever you do that is BassNectar-ish).

Now, I know people want to be helpful, like when they point out one of my children has their shoes on the wrong feet (yes, they often do. because I am trying to teach them to take care of themselves and often, they get it mixed up) I know people might think that I somehow did not notice my child undressing in the mall a couple weeks ago--and sprinting bare-butted through Build-A-Bear--because maybe I am visually impaired.  I know we all know it takes a village to raise a child and everyone wants to be in my village, because I am just that darn special.

But, really? Enough with Captain Obvious. Yes, I actually permitted Chloe to run barefoot through the city streets risking a cut foot or a shard of crack-pipe wedged in her foot. I absolutely allowed it. I enabled this homeless, bag-lady behavior because the alternative was screaming and writhing and hitting. I just wanted to get to the parking garage and strap the shoeless little monster (darling) into her car seat.

And I know what all those villagers are thinking: You, Mrs. Adkins, cannot control your own children.

And you know what, you are right. I have no control. And neither do you--your children are also running wild in one way or another.

Our children have minds of their own and no matter how hard we attempt to force them to do exactly what we want, they will never ever do it, unless it is their idea. We might fool ourselves into thinking that we've got the little loves under control with threats and bribes, but really, they are going to do what they want at the end of the day.

Naughty-spot be damned, shards of crack pipes, rocks, sticks and drafty little behinds at the mall: our children don't belong to us.  All we can do is provide wisdom, expectations, lessons in common sense and of course, consequences for poor behavior or inappropriate choices. All we can do is give our children all the tools they need to someday be healthy adults. We can pray for them and with them. We can naughty-spot them until the carpeting on the stairs is worn bare. We can ground them and take away their car keys a million times.

But, they will still run barefoot in North Philly.







Friday, April 20, 2012

For the love of lacrosse: Friends of Jaclyn Foundation



It always funny to me that I attend so many sporting events. I am most definitely not a sporty girl--I don't have any idea of the rules nor do I keep up with the who's who of the Phillies or the Eagles or the Flyers. And despite my love of words, I have to ask Mike before I post anything remotely sports related on Facebook--I just don't want to say the wrong thing. 


Perhaps that is why Lily's sisters and coaches on the Temple University Lacrosse Team have been so important to Lily's recovery and to our family. The young women on the team give Lily an example that I cannot provide. Each game, Lily watches those girls power through a game---and no matter what the score is (Lily never cares), Lily leaves a little stronger. 


Because she just saw the team that she loves playing sports and fighting for their team. She watched her sisters use their bodies to run and score and pass and play with joy. Lily has seen what is physically possible. And for a little girl, who often feels trapped by shaky hands and unbalanced steps, this is like watching her own potential in action. Lacrosse games are Lily's crystal balls.


Lily was adopted in 2010 by the Temple women's team through the Friends of Jaclyn Foundation, an organization that matches children with brain tumors with a college team. The match for us felt natural: Mike and I are both Temple Alumni. We love our school. Mike loves sports. And I love strong women.  


We went to the team's Friends of Jaclyn game just to check it out. Mike knew about the Foundation--and we knew the team had adopted another little girl, Devon Lam, who had an ependymoma (like Lily). Devon lost her life to a brain tumor. The team lost their sister. Devon's parents, Danny and Angela, wanted Temple to adopt again.  Lily has Devon as a sister too, albeit in heaven. I can feel Devon's strength and the strength of Danny and Angela at every game.  


As I look back at pictures from the past three lacrosse seasons, I see the growth and change in Lily. She stands taller. She is not afraid of her body. She is not afraid of the ball.  She is not afraid of anything (except maybe the team tunnel at the start of the game).  



I've seen Lily fall more times than I count, but I've also seen her stand back up and fight again. Just like her sisters at Temple. During the final game of Lily's Fall Soccer season, a bunch of "her lacrosse girls," came and cheered. 

Earlier in her soccer season, Lily was timid--more of a follower than a leader. With her sisters cheering and waving signs and expecting the best of her, Lily fought through that game, getting her feet on the ball and being a leader, as well as a teammate on the field. 


I've watched Lily grow from a struggling tiny preschooler who could not walk, to a powerful six-year old who can run down a soccer field.  I've watched Lily heal with the love and example of her sisters. We've healed too--knowing how much our family is not alone in our fight for Lily. 


And for that: I love lacrosse. I know every players name. And I always will.


The Friends of Jaclyn Foundation works to improve the quality of life for children with pediatric brain tumors. The program is based on love, support and friendship between the child, the team, and the child’s family. We pair a child with a college or high school athletic team based on geographic proximity so the child can be involved with the team as much as possible. The child is “adopted” by the team and becomes an honorary team member. The gift is in the relationship. The child gains a new support network of loving friends and the team learns to see the world with new eyes.





Wednesday, April 18, 2012

The First of Many: Five Years Ago

Five years ago, I had no idea what the posterior fossa was or where it was or why it existed.


Five years ago,  Lily began throwing up. It was April. The first time was on a car ride from  Miami to Key West. I thought she was car sick. And then it continued--randomly, constantly and without ceasing. She threw up on her gorgeous pink and green Lilly Pulitzer dress. I still remember the exact spot we pulled off the road to clean her up and my father telling me we could have stayed home if Lily was sick. Then there was the misdiagnosis of a bladder infection. And my frustration with motherhood--every morning I woke to Lily gagging on the monitor and I thought I was not cut out to handle it all.

The dress. Five years ago. 
Five years ago, I never heard of an ependymoma. And I thought the odds of knowing someone with a brain tumor were akin to winning the lottery or being swept up by a tidal wave.  Five years ago, the odds were good that we would all be okay.

And then, very quickly, the odds weren't in our favor. Lily had a brain tumor--an ependymoma, in her posterior fossa, the back of the brain that contains the brain stem and the cerebellum.

Ependymomas occur in adults and children. In children,  ependymomas are the third most common type of tumor. Lily's neurosurgeon never told us about an ependymoma--her MRIs indicated something else entirely. When he was able to perform a total resection and remove all of the tumor and then Lily's multiple spinal taps were "champagne clear;" he celebrated. Lily would not need chemotherapy.

Chemotherapy is not very effective against Lily's particular tumor type. But it is the only option if tumor cells are floating around in her spinal fluid. And make no mistake: chemotherapy is poison. It destroys good and bad cells alike. The heavy metals destroy hearing and can lead to permanent hair loss and all sorts of permanent ugliness.

But, we were lucky. Lily qualified for Proton Radiation--our oncologist fought for her inclusion. Lily was 14 months old; a former preemie with an adjusted age of 11 months. Developmentally, she was not even a year old. And we agreed to brain surgery to save her and then radiation to cure her.  She was a baby--and was forced to endure the worst sorts of pain--frequent brain surgeries, needle sticks, daily sedation and radiation right to her precious little brain.

So far, it has worked. And I rejoice everyday for her health. And for the opportunity to spread awareness and to search for a cure. Five years ago, I never imagined that I would be who I am now or know what I know.

But so many other families are not that lucky. Children die, everyday at the hands of an ependymoma. Attached to the brain stem, the ependymoma becomes inoperable.  And everyday, another child is diagnosed with the same tumor. Every day, another family knows what we know.

And you know too--if you are reading this--you know. I don't care how rare pediatric brain tumors are or how rare an ependymoma is or how the odds are in your favor.  Because you know Lily.

Thursday, April 19 is the first ever Ependymoma Awareness Day, sponsored by the CERN Foundation.  The Foundation will commemorate the day with a butterfly release.  The CERN Foundation has one goal: Cure Ependymoma. It researches cures, causes and treatments for ependymoma tumors in both children and adults. 

No-No. Yes-Yes.

In my children's yoga classes we always end with the "No-Yes" Meditation.

Since it is a meditation for children, it includes a lot of yelling. And while you might argue that yelling is not conducive to peacemaking and soothing your noisy, tired soul; you are wrong.

I recall, on numerous occasions, my mother excusing herself to her bedroom and screaming into a pillow. This would typically be after I threw a fit because my brother touched my stuff and I began yelling for 45 minutes about his poor behavior, followed by one of us pushing each other and then some sort of chaos involving thrown toys or glitter or both.

I always thought she needed medication. But now I have two little crazymakers of my own and I get it.

Screaming out all the angst and frustration and rage is the pathway to peace.

Our young children do it constantly. They never squash down their feelings of frustration or disappointment or rage or angst, unless we make them. We train them to squash it down and to be appropriate because, well, there is a time and a place to yell. And our frustration belongs to us--it does not, in fact, belong to our children or to our neighbors or our friends or our frenemies or anyone else.  We cannot and should not go around yelling at people. But, we should certainly yell, once in a while. If we don't, we are just lying to ourselves and someday all that hate will spill out into universe.

Unreleased hate builds up. It makes wars. It makes angry people. It makes lasting self-hate.

The No-Yes meditation creates a perfect time and place. For my young students, it works like this:

We close our eyes and sit with crossed legs. We inhale and exhale a series of loud and fast "No's." Then we inhale and exhale a series of loud and fast "Yes's"

The idea is to yell and to get out all the No's--all the negatives, all the things we want to yell, but don't. And then to fill the universe with all the yes's--all the beauty, all the things we want to share and shout to the universe, but can't.

For older children, the meditation can be taken to the next level. I often instruct my tween and teenage students to visualize all the things that make them angry and frustrated while they scream No. Often the No's sound aggressive and angry. Then with the Yes's, I ask the students to visualize all the beautiful and amazing things in their lives and shout it out with every Yes.  The sound of the positive Yes's sounds like someone shouting joy from a rooftop.

For me, who is most comfortable with a pen in my hand, I often do the No-Yes meditation as a journaling practice. First, I write down all my no's--sometimes specific and sometimes I just write No. And then I rip up the paper and toss it.

Then I write down all my Yes's-again maybe specifics or maybe just the word, Yes. I keep that paper.

The idea is not to compare the bad to the good. It is to ditch the bad and keep the good; always keeping what is real and true.

Yes. Yes. Yes. Yes. Yes. Yes. YES!






Wednesday, April 4, 2012

She loves General Tso's: A Book Update

This is totally going on the jacket of the book. At least that's done. 
Lily is sort of a vegetarian who eats chicken tenders. The breading, apparently, makes them seem less meat-like. She won't, however, eat Morningstar Chick Patties, because they are not real chicken. Other than chicken tenders, the kid will consume just about any fruit or vegetable (minus potatoes), provided there are not any fancy sauces, other than garlic and olive oil. I've seen her house a plate of raw lima beans. I've also watched as she has eaten an grapefruit and then asked for some kale chips. I've caught her eating raw basil and oregano and even lavender, straight from my garden. She adores Miso Soup, the way other kids eat cheeseburgers.

I would like to say that she is making a political statement on the karma of eating animals or protesting against processed-vegan-fake-meat products (that defy vegan logic) or is simply a plant-eater in the making. But, alas, Lily is a fickle eater. In a house where we could have anything ranging from burritos to seared ahi tuna on a Tuesday night, Lily often ends up with a plate of frozen mixed vegetables and pasta with olive oil.

It is maddening.

The day she demanded General Tso's chicken, extra spicy, I was shocked. And then when she ate it; I fainted and tweeted about it to my 3 followers.  Yes, General Tso's is very, very fried. And yes the sauce is filled with sugar, oodles of it.

But, finally we had a child who was eating an actual "dish," a food item that is made with an actual recipe; something with a sauce--a sauce!!! It felt like a miracle. It still does. Maybe someday we will convince her that marinara sauce is not poison.

I never would have predicted this startling turn of eating events.

Just like I never would have predicted that my daughter would have a brain tumor.

And that is the book I am writing. My memoir, about being Lily's mother. Not that I think I am anything special--just the opposite. But Lily is special and so are the 46 children diagnosed with childhood cancer everyday.  The 46 families--mothers, fathers, sisters, brothers, grandparents, aunts, uncles, cousins and best friends--they are special. The world needs to know and since I have a big mouth and fast typing fingers, I know, in my heart and my soul and in every vein, that it is my job to do it.

Since September, I struggled with this self-study. My Dad died and I felt a shift in my course and became distracted with the notion of writing a book about growing up with an old man dad--a grandfather dad. That subject was and is extremely attractive: after all I know how that story ended. My Dad died.

I don't know how Lily's story will end or in some ways, the various beginnings it will have. I haven't a clue how my motherhood tale will go--how being Lily and Chloe's mother will change the outcome of my own life and the lives of those around me. I have no idea how cancer will continue to be an enormous portion of our life--both its absence and its former presence.

The uncertainty of it all became a distraction and briefly, very briefly,  tossed me off course. But here I am, eating General Tso's Chicken for 12th time this month and writing my story.

It is always startling around here.


P.S. Remember my original deadline of Chinese New Year? Well, since I am my own boss (don't tell my children) and make my own calendar, I've decided that Chinese New Year is a floating holiday. I'll just use it when it is convenient. If you are completely confused by my Chinese references,  here is where I began with the book:

Egg rolls, an agent and a book (February 2011)

Update on Chinese New Year and other chaos (April 2011)

It's been a while since I had a good eggroll: the book  January 2012


Monday, April 2, 2012

My prayers.

I think that prayer is a deeply personal thing--perhaps the most personal thing in this whole entire universe. I've thought about sharing my prayers before; I haven't--at least not completely. I don't ever want to be perceived as the snake oil salesman on the corner selling salvation and prosperity with a smile. Or the woman repeating, "keep the faith" over and over at nauseam. What do I know? I am just a woman. I am not anyone who is different than you or them or anyone.

But, for whatever reason, I feel compelled to share one thing. I don't always tell God the full truth.

When I pray, I often find myself saying the things I think God wants to hear, like: "I trust in your will."

The thing is, I don't always trust in His will. And I know that God knows that. He knows everything and He can read between the lines. He knows when I am lying and He knows when I am just plain pissed off.

If I am to get real down and dirty honest about my relationship with God; the first time I cursed God out, with a verbal spew of the f-word and GD and other colorful language, was when Lily was diagnosed with a brain tumor. I begged him. I raged at him. I told him exactly what to do: save Lily and stop this fucking madness.

It was not even the brain tumor itself that led me to this horrific hissy fit--it was everything before.

When the doctor told me that Lily would be born at 29 weeks, I spent the couple hours preceding her birth praying and praising and begging for my life and Lily's life. And then, I got exactly what I asked for. I truly believed we were saved--we made it through the fire and the plague and we were the chosen people. Lily would thrive and nothing would get in our way.

Apparently, the NICU is not a Get Out of Jail Free Pass. And frankly, that still pisses me off.

I have made my peace with God, because Lily is here and she is beautiful and amazing and I actually cannot imagine my life without that GD brain tumor. It is, what it was and what it was--well, it was horrific and challenging and deeply, deeply strengthening.  I had a good outcome and I accept the path we are on.

But nearly everyday, I hear of a child who was just diagnosed or a child who may have relapsed or another child who died. And then, I get on my knees and pray, starting out:

Dear God, 
I trust in your will. But I don't. I am lying. Or maybe I am not. Fuck, God, seriously? I don't get it. I never will. I love you. And I praise you. And I trust you. But your will--your love of our souls--what about our bodies? I know you did not cause cancer, but tell me, I beg you. Tell me how to stop it. Tell me how to stop another child from suffering. Tell me how to stop another Mother from living with the bone numbing fear that her child will die before her. Tell me. Tell someone. Please

And that it is. The truth. I love God. I love Jesus. I have my faith--because that is what faith is: believing when it makes absolutely no sense to believe and trusting when you have no reason to trust. And I think, despite my disrespectful language and my fist waving prayers, God trusts me too.


Blue Monday:World Autism Awareness Day

If there is one thing childhood cancer has taught me: 


Whether our children are touched by cancer or developmental delays or autism or food allergy or mental illness or nothing at all, we all need to hold each other up. 


Today is World Autism Awareness Day. Many of my close friends are touched by autism--they are parents to children with the disorder or one of their siblings was diagnosed or they work with children.  Today is a day when we all need to stop and read about autism--whether our children have it or not--that does not matter.  The truth is, our children could have been one of the millions of individuals with autism spectrum disorder and for some of you reading--they are. 


The Centers for Disease Control and Prevention updated its estimate of autism prevalence in the United States to 1 in 88 children


Today,  I invite you to turn your lights blue--pick up a blue light bulb($1.99 at Home Depot). Make a donation to Autism Speaks, an organization dedicated to finding causes, therapies and cures for autism. Read about autism here and to reach out to those mothers who are fighting everyday for their child.