Kensie's 3rd Birthday

Sweet Kensie's life is so intertwined with Nick's for me.  I was 6 months pregnant with her when Nick was diagnosed.  Even my labor induction with her was scheduled around Nick's in-patient chemo.  Before she was too mobile, I used to bring her with us to the hospital with Nick because he said "I like it better when she's here."  When she first learned how to give kisses, she couldn't stop herself.  She kissed everyone...frequently.  Her "Kensie Kisses" brought light and love to rooms filled with poison and fear. 

Today, Kensie turned 3.  I was prepared to reminisce.  Like when we were remembering how she stopped breathing--twice--during her first day of life and had to spend the night in the nursery for observation.  Or when we were looking at her newborn photos and the photos of her second birthday.  I think every mom feels a little melancholy over how fast time flies when their little ones have a birthday or graduation or wedding or whatever milestone they reach that punctuates how these babies grow up and away far faster than a mother would like.

When Kensie has a birthday, my mind jumps right back to where we were when she was born.  Being pregnant, her low amniotic fluid, her birth, having a newborn to love and care for...They were all concepts that I couldn't fully grasp at the time.  My whole heart.  My whole head.  My whole being was dedicated to Nick.  I wish she had been born to a mother who could plan a layette and buy make a scrapbook and clean the house to nest for her.  Despite having 8 children before her, the experience of pregnancy felt foreign and surreal. 

Even though I feel guilt and loss for not fully appreciating her pregnancy and early days, she never noticed a thing.  She burst into the world full of love and spunk and life.  She embraced us and supported us, all of us--but especially Nick, innocently and passionately.  I can't think about Kensie at any stage of her life and not laugh...She is such a spark plug and brings our family so much energy and joy.

Drifting back in time made me remember the baby clothes and gifts people gave us for Kensie before she arrived.  Which made me remember the garage sale our school friends organized to benefit our family.  Which made me remember the t-shirts one of the parents made for the event.  Which made me remember the kids who shaved their heads...some over and over...to support Nick as he lost his hair to radiation and chemo.  Mostly, I am always amazed that these parents allowed, and probably even pushed, their kids to support Nick...play with him...embrace him...At a time when many would run away.  I imagine there was fear for these families that Nick would die, and the closer their child was to him, the more that would damage their own child.  But these friends and their parents didn't flinch.  One family in particular shaved their sons hair over and over again all through treatment and beyond.  They came to the hospital and took Nick on vacation with them.  They drew him closer during treatment and continue to hold him close today.  I feel that so deeply...that kindness...It overwhelms me sometimes. 

Remembering the bittersweet early months of her life is leaving me a little raw.  I hate to remember the fear and the pain and the anger that took over my heart while Nick was in treatment.  I hate to remember that Nick was sick.  I hate to remember that Nick could get sick again.

But the joy, the light.  I hold onto that today and every day of  Kensie's life.  That is Kensie's gift, our gift.  Love.  Hope.  Grace. I will never fully understand God's plan, but I celebrate Kensie's birthday and her life with a grateful heart--sentimental and wounded--but very grateful. 

Happy Birthday Kensie Rosie Baby!

Sunrise Strong

For over 3 years, since Nick was diagnosed with brain cancer, we have been hosting fundraisers at Mini & Me for Rady Children's Hospital.  We've collected money, toys, gift cards, toiletries, Valentine's...I've coordinated other groups' donations and delivered them to Rady's.  We even hosted the SHINE fashion show (http://vimeo.com/81107802) last year as an effort to raise donations for Rady's and feature the gorgeous oncology models and their moms.

Recently, as I both started working on larger fundraisers for the hospital and evaluating whether or not to continue with Mini & Me where and how it exists today (the lease is ending soon...), I decided my fundraising needed to be more organized to be more effective.  It needs a name.  It needs a business plan.  A mission statement.  Something people can understand, sympathize with, identify with, and easily recognize by name and logo.

After Nick told me after his brain surgery "This is going to be life changing...But I'm strong," I knew that "STRONG" was my new favorite word...my theme...the name of a foundation if we ever built one.  When the time came, our family sat around the computer dreaming up names and checking them against available websites on GoDaddy.com.  We finally tossed "Sunrise" into the ring...A symbol of hope and renewal.  Bright, happy, warm.  And www.sunrisestrong.com was available on GoDaddy.com!!  So our foundation was founded...On a Sunday afternoon.  In our living room.  "Sunrise Strong"

So far, we've hosted a lemonade stand at Mini & Me (www.miniandmeboutique.com)

And we've started a GoFundMe.com page--http://www.gofundme.com/SunriseStrong

We even filmed for a promotional video yesterday with the awesome Christina Fleming of Murasaki Media!

We still need a logo and non-profit paperwork filed, but we have amazing friends willing to work on both projects for us...pro bono.  I sometimes feel like I've put the cart in front of the horse, things are coming together so quickly.  But things that are meant to be sometimes do that...They just click and work and get started quickly and smoothly.  I pray every day that Sunrise Strong will be that foundation that grows easily and quickly and provides comfort and support for decades and decades for families struggling through hardships caused by childhood cancer.  

Nick and I and JoAnn Sloan went to Rady's with our first load of official Sunrise Strong donations yesterday.  We talked to Andie, a child life specialist, and we're a little clearer on the needs at the hospital.  We look forward to working more with Rady's and eventually hospitals across the country.  

And no, I don't know the future of Mini & Me...We will continue to exist as a web store, but I'm not sure if we will continue to have a store front presence in San Diego.  Ideally, I will be able to rent a more industrial space that is larger than the store front we have now.  We need space for storage and distribution.  We need a workroom.  And if we can have a small retail showroom, too, that would be awesome!  Stay tuned on that project...

And while I'm thinking about it--San Diego folks, please mark your calendars--AJ from Energy 103.7 will be going up in the Crane for AJ'S KIDS on November 7th in the IKEA parking lot in Mission Valley.  He lives in the crane for a week until he collects at least 100,000 toys for Rady's kids every year.  This year, on November 8th, his morning show producer, Hula Ramos, is hosting the first "Babyfest at the Crane" from 10:00-2:00.  I'm helping coordinate vendors and entertainers, and this event will be AWESOME!!!  Please join us!!

moved

We moved.  Again.  Down the road a couple miles to a completely different world where the house is smaller but feels like home.  The neighbors on both sides have introduced themselves, and our commutes have been slashed by at least half the time, miles, and gasoline.  Normal...Maybe we just moved a little closer to normal. 

It's been a long, long time since I've felt my feet touching the ground, known up from down, or been able to see the details of a day with clarity.  I've described my life since Nick got sick as feeling like I'm caught in a wave, one that grabbed me and kept me spinning until I couldn't tell ocean floor from surface and sky.  As I emerged from the wave, I still felt that after the dizzy dance spinning blur.  No longer delirious but not quite able to bring my scenery into focus.  That's getting better.  Slowly.  Better.

The longer Nick stays healthy, the easier it is to forget.  Like childbirth...I know it hurt, but I can't quite recall the intensity, the exact ache, or the sharp pangs that stripped my self control.  My memories shift from realism to impressionism over time, and the clarity and control I once took for granted return to my grasp.

Cancer isn't as easy as childbirth to put away and forget...People, babies and children, are still fighting cancer every day.  Nick could relapse, and we could join that fight again.  Cancer remission or even "cure" isn't as final as other traumatic events because it's so good at finding ways to creep back in when you least expect it.  Relapse.  That's what it's called when the primary cancer returns, and there is currently no cure for relapsed medulloblastoma (Nick's cancer). 

A boy, a year or so older than Nick, was diagnosed with medulloblastoma right after Nick.  His tumor was smaller than Nick's--Just the size of a walnut vs. the Nick's "small orange."  They went through the same treatment protocol at the same time.  We saw this boy in audiology while they waited to get their hearing tested.  We saw this boy in the waiting room at clinic while his mom tutored him.  We admired this boy when we heard that his Make A Wish was to build a playground for the kids in his neighborhood instead of using that wish for something more selfish.  As Nick finished treatment and passed his first, then his second post-treatment MRI with clear results...As we prepared for Nick's first post-treatment Christmas...As we complained about real estate troubles and financial woes...This boy relapsed.  He started treatment again.  We watched him on Facebook, saw his soft brown eyes and serious expression honored for hours and hours of time spent gathering donations and packing bags, so he could deliver healthy snack bags to other patients at Rady's.  There was a fundraising walk.  Rewards and awards.  Sports teams.  Corporations.  News stories and interviews.  He lost his hair again in this second round of treatment, but his stoic expression never waivered.  His work ethic never faltered.  Our admiration grew.  But so did the cancer, and this sweet 12 year old passed away yesterday.

Despite knowing there is no cure for his relapse, I somehow lived in the delusion that his good deeds shielded him from death...believed that he might be the one exception...And if he could survive, maybe Nick could if he relapsed, too.  His death is the needle in that dream balloon, and I am angry and hurt and scared and sad and disappointed.  I try not to ask "why?" very often, but I want to know...Why him?  Why not Nick?  What is Nick meant to do?  What am I meant to do?  If we are spared, for now, what are we supposed to be accomplishing to deserve that gift? 

People rant on Facebook.  Talented filmmakers create moving documentaries.  Musicians write songs.  Telethons plead with the nation on tv.  But childhood cancer research is still under-funded.  What do we need to do?  What do we need to show?  To say?  To make change and find cures?

These are real kids.  These are not aliens.  They are not actors.  Yesterday, they had curls framing their chubby faces, eyelashes batting around their big eyes, strong muscles peddling bicycles and throwing balls...Just like your kids.  Just like your nieces and nephews and grandchildren.  Their parents love them and dream for them and plan for their futures.  Their parents hold them and love them and kiss their foreheads as they sleep...Just like you.  The cancer and the chemo and the radiation make them bald or crippled...unable to eat on their own or walk on their own...their faces swollen beyond recognition from steroids...They are not freaks that belong to "somebody else."  They are loved.  They are babies.  They could be yours, and this could be your life. 

When you see a telethon, donate.  When you can offer support to a family in crisis with cancer, offer it.  Sign petitions.  Share Facebook posts.  Walk in the 5k's or donate to those who are.  Please don't ignore our stories.  Please don't ignore our kids.

I didn't mean for this to be a PSA or a soapbox lecture, but we do need help raising awareness and raising funds for research.  The world can't afford to lose any more awesome kids to cancer.

Thank God we have Nick to hold close tonight.  Thank God we are blessed with this opportunity to move forward with our plans and our dreams...for now.  I pray we are worthy.  I pray for guidance moving forward with our lives, and I pray for peace for the kids in treatment and the families grieving losses.  And I pray we find a way to cure and prevent this serial killer...soon. 



 

mixed up.

"Happy 3rd Birthday Nick!"  We said that over and over today.  We had Nick's friends and family over for swimming and pizza.  I posted on Facebook about how happy we are today.  Because three years ago today, March 9, 2011, was the day we found out Nick had cancer.  He has survived for three years past that moment. 

And we are happy.  We are happy that Nick is still alive.  We are happy that he is cancer free.  We are.  So happy.  So f*%#ing happy to be "celebrating" a holiday we should never have to "celebrate."
 
We are intelligent people.  In good, strong moments, we understand that we are the "lucky" ones.  We know, there are many, many parents who are not hosting survivor parties but rather grieving the loss of their precious babies.  We are grateful to hold Nick, full of life, cancer free Nick, in our arms every day.  We are very, very grateful.

But Mike and I both had anxiety and anger attacks today...separately.  It was good when we came together for a moment and said "you, too?"  Because sometimes when you're supposed to be something, and you're pretending to be that thing...But your heart is feeling differently, it feels lonely.  It feels like you're doing something wrong. 

March 9th, 2011 is a day I want to curse.  I want to blow up.  I want to scream at and shoot at and stab in the heart.  I don't want to celebrate it.  It was the worst day of my life.  I remember hearing that my 8 year old son had brain cancer.  I remember calling Mike, my parents, my other kids...hearing their horror and their voices crack as they cried.  I remember how sick my tiny boy looked in that hospital bed.  I remember explaining to him what a tumor was while carefully leaving the word "cancer" out.  I remember willing every nerve in my body to turn to steel, so I could smile at Nick and tell him "I'm so happy they finally found out what's wrong with you, so we can fix it."  I had no idea if he could be fixed, but he was going to see strength in my eyes and hear power in my words.  I remember getting him the stuffed panda he wanted from the gift shop and how he hugged it and slept with it.  I remember crawling into his narrow bed with my enormous pregnant body, so I could hold him while he slept. 

I remember every moment of March 9th, 2011, and every March 9th takes me right back there.  It's not the same as a "real" birthday when you remember the happy delivery room scene.  New life.  Hope.  So much joy.  We call today a "birthday" for Nick, but it's not the same...at all. 

Instead of skipping through the grocery store as I bought party supplies, I felt anxious and confused and like I wasn't capable even a little bit of hosting a party today.  Once I got to the car and started driving, all the "wrong" emotions flooded my heart.  At the moment I was supposed to be heading home to celebrate Nick's life, I was spilling tears over the brokenness his cancer caused.

I'm mad.  I'm mad that innocent children get cancer.  I'm mad that mine did.  I'm mad that Nick's cancer took his athleticism and his energy.  I'm mad that his grades are slipping, probably from his radiation treatments.  I'm mad that he can't grow.  I'm mad that I have to stick him with needles full of growth hormone every single day to try to help him grow.  I'm mad that his cancer broke relationships with people I cared about.  I'm mad that his treatments cost so much financially.  I'm mad that his siblings worried and cried and lost opportunities in their lives.  I'm mad that three years later our lives are still unstable.  I'm mad that even as we rebuild, it feels like building on quicksand.  I'm mad that we spend every day looking over our shoulders, worried that the cancer will come chasing Nick again.

Is that wrong?  Should I take Prozac?  Push the "wrong" feelings away into some vault in my heart?  Do other people's lives really look the same in real life as they do on Facebook?  Do other people only feel "right" feelings?  Or is it normal to have mad and sad living alongside grateful and hopeful inside yourself?  Right or wrong, today, it all lives in me.  Smiles in me, cries in me, laughs in me, and rages in me.   

No cancer mom looks back on the day her child was diagnosed with joy.  No memory of that news and that day in her life is anything other than traumatic and terrifying.  But Nick is watching me.  Just as he was in that emergency room 3 years ago.  Every March 9th, I have a choice.  Show Nick the tears or show Nick the strength.

Nick saw no tears today.  He saw smiles and people who loved him and treats and presents.  He heard how very glad we are that he is in our lives.  He heard how proud we are of his courage and grace.  He is our amazing gift, and he will always deserve the best version of me I can show him. 

Why do I still feel like crying?