Friday, December 1, 2017

Grieving the words.

I have this theory that death brings about new birth--I remember when my grandfather died, I met Mike—my husband and soulmate. When my Nana died, I found how much I loved words (over architecture) after reading through volumes of Edna St. Vincent Millay poetry that I found on her bookshelf. When my Father died, our miracle boy Nicholas was born. 

Energy is never lost--it just changes. 

When my brother David died, I really felt like I'd given birth to all the things I would. I wrote posts about his accident, his coma and his death. I wrote his eulogy. But I had nothing left.

I noticed it in all my projects—I was still writing and the writing was, okay. But, I found myself not caring which words I placed on the paper. I had no more moments of racing out of the shower to find my notebook to write down a brilliant turn of phrase. I have not written a brainstorm on a Post-It in two months. I did the writing work. I wrote the words. But I have not told a real story since I lived the story of my brother dying. 

David choked; and so did I. It was as if the right words—the perfect words—were choked right out of me. 

Monday, I had a particularly horrific writing day. I just could not do it anymore—even placing words on paper felt pointless. A colleague gave me negative feedback. I gave myself even more negative feedback--verbally lashing myself until I felt raw. I spent the day grieving David and grieving the words and grieving that I was failing my responsibility to be the surviving sibling who was living life to the fullest. The grief was so intense I had a hard time not crying in public and spent a large part of the morning stress paralyzed in a coffee shop with tears streaming down my face. 

Because for a writer, a world without words is gray and sad and empty. 

Tuesday, I thought maybe I should focus my energies on learning time management or accounting or something practical. Then a random email about a writing program I’d been casually researching for a few years popped up in my email notifications. I deleted it.
Wednesday, I had 15 minutes of downtime waiting for an appointment to start. I decided to be practical and clean out my inbox. There was that email from John Hopkins University—I thought I had deleted it. I noticed it was a reminder about an Open House--an Open House in October. 

The email was dated 9/18/17; the last Monday of my brother’s life. 

I clicked the links and then started an application on a whim. I am not sure why; I just did it. And then I forgot about it. The day got busy. I moved on to other things. 

Then Wednesday night, my computer was crashing and blinking and the only thing that would work, was the application to John Hopkins for Science/Medical Writing. So I worked on it a little more--I was not going to apply, but there was something therapeutic about filling in forms about myself. It kept my mind off burials and David and Christmas without him.

Then Thursday afternoon, John Hopkins called me for a pre-admission interview. During the interview, I still thought, "I am not really going to do this," but then I mentioned my work with Alex's Lemonade Stand Foundation and the Admission Officer told me how much she loves Alex's. Her younger brother is a childhood leukemia survivor. She said when he was diagnosed in the 1990s, there weren't family resources and she remembers her family feeling so alone and confused. She said she loved that there was a charity that helped families make a difference, together.  She thought it was nice I supported a charity and thanked me for helping families like hers. 

Then I told her that I was a mother—just like her mother—the mother of a survivor and yes, I understood.  ALSF exists because of an amazing child and an equally amazing family—and yes, I love writing about the research, because ALSF is the leader that will find cures for childhood cancer. And then I told her about all the amazing projects and researchers I get to interview and write about and talk about. Then I told her about my work for Happy Family and my new project writing about raising environmentally friendly kids and infant/toddler nutrition and how much the world needs organizations like ALSF and responsible corporate partners like Happy Family. I told her my brother was an organ donor--and the world needs to understand the importance of tissue donation and medical research.  

The world needs complicated information-translated into language that we all understand. Technology and science and medicine and nutrition should not be secrets or inaccessible.  I told her that I had the words to do it---but sometimes those words are just out of my reach, but I know if I just stretch myself a little bit, I can grab those words. 

And she said:  

We will expect your application sometime this month.

And suddenly, the words are back. Energy is never lost—it is just changed.

Instead of a eulogy, I’ve got a Statement of Purpose to write. 

Monday, June 13, 2016

One Last Stand

I love a catchy beginning--but I've got nothing this time around. So here it goes:

We are moving. June 18 will be our last lemonade stand in our front yard in 08021.

Of course, not our last lemonade stand forever. Just our last one here, in our first home. The home where we brought home all our babies and made so many memories. The home where we hosted our first Alex's Lemonade Stand in 2009. The home we raced home to after Lily was released from the NICU in 2006 and the PICU in 2007. The home tiny Chloe came home to in February 2009 and the home our sweet surprise Nicholas first slept in and made our family complete in 2012.The home where we hosted 7 lemonade stands and planned our #BigLemonade World Record breaking cup.

Our home.

We are sad to leave. We are excited for the new house (not far! Just a couple towns over and closer to our church.). We will miss this bungalow that has long been overcrowded with stuff and lemonade and love and memories and chaos and glitter (note to all potential new owners: you must love glitter, I think it seeps from the walls.).

Our children will miss our front yard lemonade stands the most. When we first announced the move and made it clear this was happening--Lily said: " What about my lemonade stand? Will the lemonade stand butterflies follow?"

Lemonade stand season is ideally timed with butterfly season. Lily once heard Jay Scott, Alex Scott's dad, tell the story of the butterflies in their front yard every lemonade season. The stories of Alex's life and legacy are so deeply entrenched in Lily's memories and in her own life story. Lemonade and butterflies and hope and strong, warrior little girls who change the world--are not fairy tales but true life stories.

Our front yard is filled with lilies (both the human and flora kind) and lilacs and lavender and daisies and other blooming delights. There are always butterflies in June, along with lemonade, in our front yard.

For our kids--our annual Alex's Lemonade Stand is so much more than tradition--it is truly part of our home and the story of our lives.

Someday, the new house (which we've nicknamed "Eldridge," for the street it is on) will also have butterflies and lemonade and truly be our home. It is hard for all of us to fully see that now--we have such an amazing community here and there is always the fear that our community now; won't follow us a few miles up the road and well, the new community won't see the butterflies and lemonade.

However, we've learned that Alex Scott's legacy of lemonade, hope and childhood cancer research is infectious. I am pretty confident wherever the Adkins Three land, the butterflies and lemonade will follow. We have Alex to thank for that.

There are 5 days until our one last stand in the Front Yard of 08021.  We can't wait to see you. Bring friends. Bring hope. And bring yourselves. Oh and save the date, we already have our first Eldridge Lemonade Stand planned, just at the tail end of butterfly season: September 18, 2016.

We'll see you there too.

Every donation funds innovative, cutting-edge childhood cancer research. Alex's Lemonade Stand Foundation has an amazing Scientific Advisory Board that works to identify the most promising projects and to fund breakthroughs. Because of your support, Lily's annual lemonade stands for ALSF have funded over 40 weeks of research. 

If you can't swing by for a cup of lemonade on 6/18 (from 10-2pm in our front yard.), then donate online! Please share the link to Lily's stand! Link:

Tuesday, September 1, 2015

3,121 Miles. #Journey2aMillion

I was waiting in airport security with Lily. She was just 15 months old. Forty-eight hours earlier, Lily was in the PICU, recovering from her fourth and final brain surgery.

Her stitches had not dissolved and there was still dried blood on her incision.

It was the summer and there was a long, long line. I tried to ask to go ahead of the line--to go through the line for people with special needs or for frequent fliers, but I could not form the words: "My baby had a brain tumor." I stood there silently, texting Mike, worrying about Lily in the stroller, scared she might vomit in the heat of the long security line.

We waited and waited. Mike stayed home for this trip; he needed to work and we knew this would be the first trip of many and we needed to save his time off for the long haul ahead. This time I would meet with the doctor in Houston who would manage Lily's proton radiation treatment. I was alone with Lily, studying her.

There was the new incision, plus all the others, everywhere that formed a map of her time in PICU. Brain cancer leaves its mark everywhere--it is messy, unrelenting. We had not fully removed the dirty, sticky outline of adhesive tape that formed a small rectangle around the spot that held all those IVs. It looked like an outline at a crime scene.

We waited for an hour. We made it through security. We made it on the plane. Lily sat on my lap--we had the middle seat--the only seat we could get with little notice. The passengers next to me just stared and stared at the long, long scar running down the back of her head and onto her neck.

I could not tell them what happened. I could not say: a month and a day ago my daughter was just a baby. Now she is a baby with ependymoma; a baby battling childhood cancer. I could not say that I was staring too; staring at that long scar, remembering that Lily had been facedown in an operating room for 4 1/2 hours. She had to receive 4 units of blood. The tumor did not want to let go.

Our flight was 3 1/2 hours. It was 1,560.5 miles to Houston; 3,121 miles round trip.

When you leave your home for cancer treatment for your child, you truly leave everything behind. You leave your bed, your friends, your dog, your cat, your normalcy, your sanity. It is all left  in panic, as if a storm is coming. However, the storm already swept through and you lost all those things  the moment your child was diagnosed with cancer. You traded your bed for a hospital chair and your friends for nurses and other shell-shocked parents. Your pets have become something you need to have someone else care for because you are gone; gone in the night and racing right into the storm.

Because you have to get right to the center to fight--and then you have to go where the hope is--you have to try to find a cure, no matter how far you go.

Our trip for proton radiation was 3,121 miles.  My friend Stephanie has traveled over 18,000 miles for her son Nico, who is battling Neuroblastoma. Keren traveled 4,600 miles, for Cole, her neuroblastoma survivor. Renee traveled over 6,606 miles for Felicia who battled Wilms Tumor.  David well over 1,600 miles for Jonathan, his son, who battled ependymoma. We all left it all behind for our kids. We keep leaving it behind with every MRI and treatment plan and follow-up meeting and radiation treatment.

And then there is my friend Robin. She traveled endlessly--thousands and thousands and thousands of miles for a cure for her daughter Campbell, who battled ependymoma of the brain and spine.  Campbell never got her cure. She is forever 8 years old. Brain tumors never want to let go.

That is why this September, during Childhood Cancer Awareness Month and Alex's Million Mile, we will walk and run and ride and log our miles for a cure. We will leave it all behind--our comfy couches and car rides and our fears--and we will walk, run and ride right into the beautiful storm of hope.  We have no choice. We do it for our children--we do it for our friend's children--we do it for the children  who are diagnosed each day. We do it because childhood cancer remains the leading cause of death by disease in children. Children are diagnosed everyday. Children are dying everyday.


But there is hope. There is hope, one mile at a time.

This September we will join with teams all around the world in Alex's Million Mile--a month long awareness and fundraising event. We will track our miles and collectively reach 1 million miles and 1 million dollars for childhood cancer research.

We will do it, one mile at time, leaving behind all those doubts and fears. Trading the storm for the joy of hope.

If you feel inspired to take this journey with us and log your miles in September, join Team #BigLemonade for Alex's Million Mile. When you join, you will record the miles you go and with every step you take, know that you are walking with all us of towards hope for a cure, one mile at a time.

Monday, August 17, 2015

His Big Sister.

When I was 8 years old, I woke up one Saturday morning and declared that I would marry my brother. I decided that I would take full responsibility for being his family when we were grown up.

Because I was his big sister.

I was too little to understand that marrying your brother was not typical or normal or advisable. But I was old enough to understand that my brother was far from typical. I spent nights lying on the floor of the upstairs hallway with my ear pressed to the vent listening to my parents discuss David and David's future and David's disability. Before I knew my ABCs, I knew that David might not ever be able to tell anyone his name.  I knew that David had challenges and differences far beyond anything my parents had planned for their youngest child.

I knew that David would need me.

A short time before I made my bold declaration, I was at the playground with David. He was waving his arms--something he did when he was excited. He was also drooling. And he was making noises that were not words. He was having so much fun chasing me. And I was having so much fun being chased.

Then some kids asked me what was wrong with David. Why was he like that? What was he doing?

I knew then that the world might not love my brother. So, I had to love him enough for the world.

David is now 35.  I am fairly certain I've failed miserably at loving him enough for the universe. I am far from the devoted sister who races to his side every moment. I am far from the sister who picks him up once a week to take him to movies or to a concert. I am not entangled and close-knit and attached to my extended family in a way that has me involved in the daily bits of his life.  Some of this is my personality and some of this is circumstantial--David cannot speak or read, making communication difficult.  I'd never invite my brother to live with us and I'd never consider becoming his full-time caregiver. These things are outside of my comfort zone and far from something I am capable or willing to handle.

As life companion for my brother, I've most certainly failed.

Despite my failures, David has a successful life of his own--a life that by my own ridiculous standards may seem simple and small, yet for David is complete.  He has a home away from our childhood home--a group home of his own with friends and roommates. He has a job. He has a social life. I forget about him in my daily life, which I guess is a normal thing for a sister to do sometimes. He is taken care of--my father made sure he would be--and I am able to get on with my own life, unencumbered and unattached.

It all goes well, except for the little voice in the back of head that reminds me of that vow I made when I was 8. It was a vow built on knowledge and fear--the knowledge that David would need help to make his way in this world and fear that no one would ever love him enough to care.

It is the voice that says: Outside of my tiny family does anyone really love and care about David? Would they miss him if he was gone? Would they mourn his absence for more than a moment?

Before you protest and jump in and say, "Of course! Of course! We love your Brother! He is amazing," I am not worried about that general kind of love. It is not the kind of love we have for those our loved ones love.  It is not about the kind of love and appreciation we have for people we see in Facebook posts and in Huffington Post stories and on UpWorthy. It is not the kind of love we all have for our follow human beings. It is not the viral sort of love we have for people we will never really know.

It is the kind of love that leaves us with a hole in our lives when that person is gone or missing or out of commission. It is real life, true life affection, admiration and fondness. It is the missing kind of love--the kind most of us know our friends and spouses and family have for each of us.

David is 35. He is in the hospital fighting double pneumonia. I am scared for him--scared his disability will make his recovery long and painful. I scared he will never cough hard enough to clear his lungs. I scared he won't get better.

I am scared that no one misses him, the way his big sister does.

Tuesday, June 2, 2015

Meet my Lily.

In the midst of planning our annual Alex's  Lemonade Stand Foundation lemonade stand, I often forget why we host this event. It reminds me of the wedding planning days--getting caught up in flowers and forgetting the end goal is a marriage not a centerpiece.

We hold our stand for our daughter and to keep the legacy of Alex Scott alive. We hold our stand to find cures for the dozens of childhood cancers that threaten to steal away childhoods and lives and parenthood.

We hold our stand for the world to know our daughter's story.

My daughter's story is not: "Lily had cancer." or "Lily had a brain tumor." Her story is not that survived ependymoma. Nor is her name: "Lily Adkins, the girl who had a brain tumor."

It is easy to lose sight of Lily's story in the midst of fundraising and mixing and planning.

Lily's story is that she was born 11 weeks early because I had preeclampsia. She was a beautiful newborn--she smiled before she was supposed to and developed a wicked sense of humor before she could speak. Lily's first words were not Mama or Dada. Her first words were : "Good Girl." spoken to our sweet, loyal dog Lexus.

Lily always has a kind word to say to those who surround her. Lily is kind. Lily is the type of girl who lifts up other girls. It is not to say Lily is a saint, but Lily is the friend, who despite her own aspirations, will cheer her girlfriend on during a solo or a ball game.  She is the girl you know will show up for you without asking for anything in return.

Lily was 14 months old when we finally found out why she was so sick. Seconds before, the ER doctors delivered the horrible news, Lily was laying on a hospital bed in the ER, laughing hysterical and begging me to blow more raspberries on her chubby little baby belly.

She had been vomiting for days, most likely had the headache to end all headaches and had so much hydrocephalus that she was medically unstable. Yet, Lily was there--showing up for us, laughing for us, being our beautiful, happy daughter.

Lily smiled and laughed and cried and struggled and then laughed again through her treatment. While she is a loyal friend, she is also a competitor. During years of Physical therapy and occupational therapy, my girl  did the work to get herself walking and running and dancing and writing and twirling, because she would be damned if anyone would beat her.

Lily still works hard everyday to keep up, to read, to write, to play music, to dance and to play sports. I forget sometimes how much Lily has to work to do the things that are easy for other kids. I forget that when Lily is in the zone, she will practice the same spin for 3 hours, write the same words 100 times and run the same distance until her heart is thumping.

Lily is a sister too. And Lily's sister Chloe and her brother Nicholas are more than the siblings of the girl who had a brain tumor. They are fierce supporters, thick as thieves and our tight-knit, loud, chaotic crew rolls together through thick and thin. We are this way in spite of cancer. We are more than a brain tumor. Lily is more than the disease that tried to steal her from us.

All those other children--the 720 that will be diagnosed today and the 250 that will die--those children are so much than their disease.  They are future leaders and girls who dream of becoming mothers and boys who dream of driving race cars. They are children who wish to grow up and conquer the world. They are kids who can't wait to go on vacation with their family and look forward to playdates. They are babies in strollers who love their puppy dogs and their mamas. They are teenagers who are planning college visits and elementary school students who can't wait to go on field trips. They are loyal. They are smart. They are short. They are tall. They are beautiful.

This is why your support is so critical. This is why your support is needed now.  Your donations, your shares, your tweets, your support, your showing up--that will help us find a cure, one cup at a time.

Join us: June 6 from 9-1pm at Lindenwold Park (1000 United States Ave, Lindenwold, NJ 08021). We are going to serve a big, World Record Breaking cup of lemonade (thanks to our sponsors Auntie Anne's, APR Fabrication, Primus Builders, Republic Refrigeration and so many others). We are going  to go BIG, so kids can go home and be kids.

Donate online:

Tuesday, May 26, 2015

Where does time go?

I haven't written here in a while. It has been months.

Where does the time go?

Since I've written things have happened--a person we love was hit by a car while riding her bike. Rachel. Rachel, the beloved friend and true sister to my children, is in a coma. A coma.

That is a big thing, you know?

We finally, after 3 years, buried my father at a National Cemetery. I initially delayed the burial of his ashes when he died in September 2011. I could not take one more funeral; there was no way I would stomach one more morbid, sobbing remembrance. Then I had a surprise baby boy, no doubt a gift from the great beyond. Then I had more excuses and the military had more red tape and more paperwork and then my Mother, somehow, scheduled the Committal Date. Committal--that is what the military calls--like we are committing my Father to be actually dead, not just passed away--but dead.

It is all too much for me to ever fully put into words.

My kids keep growing and learning and misbehaving and making me laugh and making me weep with joy every night. Each of them speak more eloquently now--ask for things more specifically. Lily is practically a teenager--I see her as herself--not just as my daughter--but as a fully independent force, just Lily. Chloe is getting smarter, she is developing reasoning skills that nearly eclipse mine and she is learning to tell me when I need to stop treating her as the same as her sister and still treat her as she-6 years old. Nicholas speaks and screams and screams and then screams words--throwing them at me like a belligerent homeless person, reminding me that when I am not here he cried and then burying all his sweet little boyness into me--the perfect, most delicious hug that washes away the screams.

I will never be worthy of these children and that is the way it should be.

I am, also, apparently attempting to break a World Record for the Largest Cup of Lemonade--an endeavor which is entirely ridiculous, not part of anyone's 5-year plan and absolutely a scene in a sitcom (remember Cindy and Bobby Brady see-sawing?). But it is an endeavor which does not remotely surprise me. In 1995, with both our feet clad in Vans, Mike and I laid on the floor laughing and vowing to never, ever lead a boring life.

Years later, our first daughter was diagnosed with cancer. Now, we are making a huge cup of lemonade, inspired by the beautiful Alex Scott and her amazing family who continues her legacy. When life give you lemons..  .you make the biggest darn glass of lemonade possible.

It is never boring.


Wednesday, March 18, 2015

MAKE IT LESS POINTY: A toddler's list of complaints

It seems my sweet barnacle boy is no longer content to hang onto a piece of my flesh for dear life.

Now, at 2 years old and change, he must have a piece of my flesh and his cheese sandwiches cut into perfect squares. If there is anything less  than a 90-degree angle on that sandwich, this happens:

When I ask him not to play with steak knives, this happens:

When I tell him it is not trash day and the trash trucks will not be coming by,  this happens:

The kid has serious complaints.  I cannot even hear him scream anymore. In fact, as I write this, he is screaming because I won't allow him to put his slice of pizza in the toilet. It is starting to sound like music--the type of music young people without children listen to at a bar. (Sigh. When can I go to bar?)

Since he is still illiterate (I know, I know I need to invest in "My Baby Can Read" ), I compiled his  top five list of real troubles (the above are just minor annoyances):

Note: each of these cause an immediate loss of motor skills, back arching and bat-shit crazy kicking and screaming.  

1. Shoes
Apparently shoes are "HOT" and "NOOOOO" He is so anti-shoe, that he has spent hours attempting to pry the shoes off his Spiderman wall decal and occasionally finds shoes just to throw at me in protest. He also demands that everyone remove their shoes upon entry to the home, at Target and at piano lessons.

Now that's hot. (I wonder who will get ringworm first,  him or me?)

2. Doc McStuffins

Apparently my two-year-old has uncovered the shocking truth: Doc McStuffins is not licensed to practice medicine in New Jersey.  Before the first line of "It's time for a check-up" is complete, he cannot handle the hypocrisy. If he sees Doc in the toy box, he smacks her with a choo-choo.  You can hear his battle cry of  "NOT MY DOOOOOCK," two states over.

Didn't you know that Doc McStuffins is a snake oil salesgirl? Look for the shocking reveal and Doc McStuffins take down on a very special episode of Paw Patrol and whatever you do, DO NOT MAKE AN APPOINTMENT WITH HER.

3. Car Seats that are modern and up to safety ratings 

That gorgeous and safe $7 million car seat we bought and the other lovely car seat we were gifted that is rated for crashes and impact--those are OFFENSIVE. None of that new-fangled modern stuff for my toddler.

He prefers the Pink flowered Britax seat that expired in 2006. The new car seats make him suspicious and are "NOT MINE BABY CAR SEAT I TRY. NOT MINE BABY CAR SEAT I TRY. NOT MINE BABY CAR SEAT  I TRY."

Did I tell you that they are not his baby car seat I try?

4. Diaper Changes

Even if poop is falling out of his diaper or if he happens to reach in his diaper and scoop some samples out, that is all preferable to wipes and clean diapers. Ever the environmentalist, he does not want any unnecessary diaper changes. Nor does he want to use the potty, because that is where you keep your pizza.  Even when the poop and pee is leaving a trail,  he is "I am okay! BYE!! NO HIDE SHHHH". It is a JOY to chase a poop-y toddler around midday when sober. It does not get any better at 8 pm, after a glass of wine.

If you need me, I am hiding, SHHHH!

5. Sitting to eat.

Chairs are made for pushing around and using to climb onto the counter to get a steak knife. Chairs are not made for eating. If you ask him to sit once, well, then you will get a handful of kale salad (that is covered in ketchup) thrown at your face.

If you ask him to sit a second time, well, then he just climbs on the table and sits in the salad bowl.

After all, "mama did ask. I try salad."

However, you know what makes it all okay? This:

"Mama, I a quack. quack."

It's okay kid, complain all you want, you are so darn cute, you carry it well.