Where in the World am I?

“To move, to breathe, to fly, to float,
To gain all while you give,
To roam the roads of lands remote,
To travel is to live.”  

-Hans Christian Andersen  "The Fairy Tale of my Life, An Autobiography"

 

As I come out of the cave that is my own little world, I have continued to hear the same phrases... "I didn't know you were go to _____, or doing ______ .  What are you up to Amanda?"

So we have been gone a lot this year.  Okay "I" have been gone a lot this year.  And I know people have been wondering "Where in the world are they now and what in the world are they doing?"  Its been a strange 6-7 months of serendipitous events that have taken us every which way and to every which corner of the globe.  

So I will start with the key answer to what many in our lives have been curious about lately....  

Mount Kilauea on a rare day filled with visible erupting blasts.  Volcanos National Park, Hawaii March 2016.

1. Yes Nieva still has her port in, but it comes out April 29 (YAY!!)
2. Nieva has been off treatment almost one year without relapse which is awesome!
3. Nieva doesn't get to be considered "cured" until she has been off treatment 5 years (boo).
4. Moving on to me,  Yes I did recently get my 200 hour yoga certification.  
5. Yes!  I am still mainly a photographer who is passionate about documenting stories and plans to continue to mainly do this full time again come summer.
6. Yes I am still based out of my studio downtown on Phillips (with a group of other amazing creatives). 
7. No, I am not opening a yoga studio.  
8. Yes, I will be teaching yoga and possibly meditation (Although the extent to which will mostly be formulated by a cause on my heart, and the way this all looks is still to unfold).

Now then on to the important stuff.....

Arches National Park  Moab, Utah  Amanda's Imagery November 2015

After 2 years of being on high alert, moments of life and death, and endless pills and pokes and at-home IVs day and night...  We really couldn't go anywhere.  We were doing our best in a world where we had to feel fear of relapse, infections, sickness, or complications of low immunity.  When the smoke cleared (so to speak), we all were left in a sort of stupor... trying to process everything that has happened these past few years and especially those months April through July last year when Nieva battled for her life through Varicella.  

We were trying to understand why a little girl must endure so much.  Trying to calm the fears and worries of relapse... the anxiety of knowing 1 in a million can be you or a loved one.  And then wrestling with how its so easy to tell someone to just move on into the normality of life... but how different that looks in reality when its your own experience.

Hanging with kangaroos outside Perth, Australia  September 2015.

One theme or lesson that was strong and consistent through these past years was that of the fragility of this life.  A realization we don't always get next year or even next month to do and see the things that may matter.  To say we were in a funk would be an understatement.  (Honestly, we are still there in some ways).  

The ways in which health emergencies mess with the mind are real and true.  I have a lot of notes and journal entries to convert to this blog and am ready to share so much I have learned on this path.  I don't claim I have all or any answers, but I do want to share in hopes something may resonate or help.  

We are all so unique in this journey through life and I continue to discover and find my way more with every month.  Despite the pain and hurt, I feel incredibly gracious for the positive imprints these experiences have lent to us.  We can really wish for nothing more than that.  I wish for all of us , family, loved ones, friends and of course Nieva herself, to come out of this experience stronger and better as people.

Waterfall Hiking in Spearfish Canyon, October 2015

I suppose its fair to say the last several years made us stir crazy.  Jordon and I love traveling.  We are not great with routine or mundane.  We like adventure and experiences and meeting new people and trying new things.  When things settled, I knew in my heart a part of our healing journey was going to include getting away here and there.  While a small community affords an amazing base of support and love, there is also a true peace in being able to be in a place where noone knows your history and circumstance and you can just be on a level plane of existence to process and regenerate.  Both states of being have their advantages and disadvantages, but truly the ability to get away has been integral to transitioning to the next phase of our lives and understanding what that looks like.  

So where in the world were we?

Exploring Lake Sylvan with friends.  October 2015.

Last September, I travelled to Australia to visit two dear friends and documents one's gorgeous wedding.  In October, we were surprised and honored to be featured in Hood Magazine's "Families that Inspire." and Nieva had a blast being on the news for the article.  We then headed to the Black Hills for waterfall hiking for Jordon and I's anniversary and visited Sylvan Lake and connected with friends.  The end of the month Nieva was on the news again for Hood magazine for Halloween. The next day I photographed with friends an amazing Halloween themed wedding.  

Jordon, Nieva, and I then left town on a three week road trip across the western United States.  From South Dakota to Nebraska, Colorado, Utah, Wyoming, Kansas, Iowa, Arizona, Nevada, and California.  Our main destination was a conference on better health for children with cancer and after treatment  (Through KICKcancER).  My goal was to have long needed family time (away from computers) and to be able to bring conference information back home to SD (We will be meeting starting in April to discuss some of the themes and learn yoga/meditation for coping with stress).

On this trip we hit national parks, L.A., San Diego, Las Vegas, and met with friends and my sister.  Nieva hiked, experienced the San Diego Zoo, splashed in the ocean, wandered through ancient petraglyphs in the dessert, wandered through snow covered misty mountains, walked beside waterfalls, and generally escaped from everything she knew stuck in the confines of our home and hospital walls. 

Colorado - Amanda's Imagery - November 2015

Hanoi, Vietnam - Temple of Literature - Amanda's Imagery - February 2016

Late January, Jordon and I spent time for ourselves to reconnect.  We left for Vietnam to visit Jordon's brother who has been living there 1.5 years with his wife who is from there  (Long story short due to insurance and fiascos of when we were supposed to originally attend his brothers wedding, this trip ended up being insanely reasonable).  

The highlight was the misty world wonder called Halong Bay.  Beautiful misty rocks jutting into an emerald bay.  I could only imagine in my mind that bits of heaven must be like this place.  There is no comparison to the quiet and untold beauty it exudes.

Holang Bay, North Vietnam - February 2016

After getting home I enjoyed Valentine's Day activities with Nieva and my Grandma's birthday and then left for Hawaii for three weeks to get my 200 hour yoga certification.  This has always been a dream, but seemed crazy (How could I leave Jordon and Ava for three weeks!?!).  But then Jordon uttered those dangerous words "Why not?"  Ha!  One month later there I went.  A friend pointed out, some parents leave for a year at a time for military duty or for college internships.  You are doing this to give back and to heal yourself, which in the end benefits everyone around you. 

Black Sand Beach, The Big Island (Hawaii) - March 2016

Hawaii was a HUGE learning experience.  Three square vegetarian meals, an hour plus of meditation, and hours of yoga daily.  Structure from 5:30am-6:30pm and then studying.  Living at the yoga ashram was a very surreal experience because its been a very long time since I have been somewhere completely on my own.  Its also been a long time since I have lived under such extreme structure (probably college and even that did not compare to this.  Even Oxford was very much my own schedule of when and how I studied).  I did get some free time though.  I snorkeled, hiked a volcano, and black sand beaches.  I saw a beautiful waterfall and watched sunsets over the oceans.  I don't care how corny it sounds... I journaled, I prayed, and I generally felt my soul patching back together.

Snorkeling -  Kona, Hawaii - February 2016

All of these trips fell into place in an "other-worldly" and "meant to be" sort of way.  They all were things where we should have said "That just isn't possible" or "this doesn't make sense to do."  But we didn't say those things.  And somehow the story wrote itself in the way it needed to.  I am thankful for each journey these past 7 months.  The good, the bad, the happy, the sad.....  No trip was perfect, but each was amazing in its own way.  I am thankful for what they have taught me.

Kona, Hawaii - Amanda's Imagery - March 2016

In looking back, I have really learned how to recognize negative thought patterns and in turn negative habits.  I am sure continuing to do so will be an ongoing challenge.  Attention has always been difficult for me.  I have such vast interests and a brain that is anything but quiet.  This sometimes gets me into trouble.  I have heard every range of comment on myself on the spectrum of good to bad.  But what are all these labels but an ebbing and flowing stream of attempted control from outside ourselves?  At the end of the day none of it matters except what I believe (And in turn what you believe about yourself).  I am not talking about becoming conceited or arrogant, but being kind to yourself.  There is a lot of power in that. 

I plan to go into these adventures a bit more as time progresses.  But today I am catching up on edits and home snuggling with a sick little girl as I write.  In the meantime I ask, what is your story?  Where are you on your own journey?  I look forward to continuing to find our path and wish the best to all continuing on their own.  

Much love until next time the writing bug bites!

-Amanda 

9 Months off Chemo

Hey all!

Its been a couple of months.  I just wanted to give some updates.  Nieva has now officially been off chemo 9 months!! And she has been healing from her Varicella/Pnuemonia scare for 6 months!!  Last week we had our monthly checkup with her oncologist, and today we had a dentist appointment and her FIRST well visit back in her regular peds clinic (She still will continue regular oncology visits monthly through May, and then every two months a year, then every three months a year, and so forth), SO we are excited to be entering back into normal clinic settings even if it is in conjunction with our oncology checkups.

At last week's oncology appointment we got news that if all continues on well, we can have Nieva's port removed in approximately 3 months (This will be close to the three year anniversary of her diagnosis date).  All her counts looked great and she has been showing immunity to Varicella.  This means we can breathe a little and not be so scared if we hear about a chickenpox outbreak (You can get up to date on the background of all of that here if curious: www.caringbridge.org/visit/nievarebecca).  All in all, great news from the oncology stand point of things!!  Leukemia holds relapse risk, but every month out we get from treatment, the chances of relapse goes down a bit more which is of course great!!

This morning at her pediatric dentistry appointment, we talked about the fact Nieva's front 4 teeth have almost completely worn away (seemingly just over this past year).  We were assured this is likely a combo of chemo weakening the teeth and presumably also some acid reflux from meds (judging by the fact the erosion is from the back of teeth, as opposed to just straight on bottom from grinding which is what I suspected initially).  Since she has all baby teeth yet, the good news is we can be hopeful there will be no problems when her adult teeth come in.  Her dentist also seemed surprised by her great oral care (chemo can cause a lot of issues and I hate to say I had braced for the worst for today).  Her teeth looked fabulous though.  No cavities, no issues, no surgeries needed, and well.... no problems.  

At her well child 5 year checkup we went through her checklist.  They tell us it is common for them to be able to do a fair amount of the questions, but not everything is expected for the normal child.  You don't do "well child" visits during treatment so its been almost 3 years since we have filled out one of these forms of questions.  I suppose mostly they do not do them because you are just trying as caregivers to get through cancer. And well... they are WELL child visits and she certainly wasn't well.  We had been made aware you can expect potentially lower scores and some falling behind with weight, height, abilities, dexterity, and overall success with this visit etc.... so I was a touch nervous about this.  

Well... I guess noone told Nieva she should be behind, or shorter, or what-not.  Her height and weight are perfectly in the 85th percentile and in perfect ratio to eachother.  She pretty much aced her abilities tests.  Many tests exceedingly so (Oh you want me to stand on one foot for 5 seconds and I get 3 tries, how about I do 20 seconds in my first try.  No prob Mom).  Lol!  I don't say any of this in a bragging kind of way so much as a shocked and so incredibly pleasantly surprised kind of way!!  Again I had sort of braced myself for there being some bad news somewhere and am just so thankful to hear all GOOD!!

Nieva has been sleeping great and eating great.  She is for the most part super happy and fun and the spunky and zesty little fireball we have always loved.  We are so incredibly blessed to have had so many fun adventures with her this winter.  

We got our official notice yesterday talking about entering kindergarten!  We couldn't be more thrilled!!!  We had forgotten what words like "normal" or "peace" meant.  Thanks again to all who have prayed for our daughter, lent a helping hand to our family, and/or believed in her healing.  Also, a huge thanks to those who have helped directly with her through school and child care and in the hospital.  You are all awesome and part of why she is so happy.  We have been homebodies a bit more and slowed down to focus on peace and relationships this year.  It has been a beautiful season of healing and transformation for all of us.  I think we have all grown and learned so much about what is truly important in this life. Thanks for reading.          

Image by:   Amanda's Imagery 2016  www.amandasimagery.com

Image by:    Amanda's Imagery  www.amandasimagery.com

Image by:    Amanda's Imagery  www.amandasimagery.com

Image by:    Amanda's Imagery  www.amandasimagery.com

"N" First Day of Pre-K ~ Millions of Emotions ~Amanda's Imagery

The emotions of today took me off guard. N's gone to preschool 2 years prior already at a private preschool. So I guess I didn't expect today to be so emotional. There was something about the chaos of orientation on Monday evening though that really took me off guard. SO many kids and so much going on. So different from our quiet little world that is home. Nieva and I have been essentially glued at the hip all spring and summer after discontinuing preschool and daycare last February. After her three month battle with the chickenpox and now ending her cancer treatment, the world feels sort of strange and new. What do I watch for? What do I tell her teachers to watch for? I was feeling the anxiety dropping her off despite her enthusiasm. When I picked her up I think some small part of me wanted for her to miss me terribly. She ran to me full speed and gave me a huge hug as I walked to meet her after school today. Seriously, all the feels! She loved her first day and is so happy. I hope she is always this enthusiastic about learning. Today is a milestone that we got experience by the grace of God. I overhear so much petty concern in the day to day. But our experiences have made me realize how little care I have to complain about little things, because there are much BIGGER things around us to complain about. Things we could all make a difference with if we poured that energy into good. When you have watched your child lay lifeless in a life and death balance as we did... every moment like this feels so huge and special. 3 short months ago machines were breathing every breathe for this child, Her face and mouth and hair and organs covered in sores. When she woke up from ventilators she seemed to not recognize anyone for almost a week. We worried whether she had been cognitively damaged for life. Whether she would ever come back to us. And then we went home and were crushed when she relapsed with her chickenpox and continued on battling them from April 28th through late July because her chemo weakened body couldn't fight.

These photos just make huge tears well over and my stomach tie in knots. We are so lucky and so filled with gratitude for her life. Count your blessings as your children walk off to their first days of school these few weeks. We are so thankful for another year! :)

Sioux Falls Photographer ~ Amanda's Imagery Portrait and Wedding Studio

www.amandasimagery.com   Amanda's Imagery 2015

The Second Book.....

"No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit....."  -Helen Keller

Well we knew it was coming.  In the children's cancer world you get two books.  One on diagnosis day.  It tells you all the things to expect during treatment.  Then if you make it to the end of your chemo you get a second book...  One that tells you everything your child can expect to possibly encounter as side effects and problems throughout the rest of their life.  Relapse of course is scary, but chemo can cause secondary cancers and other debilitating conditions as well. It seems a bit counterintuitive that the medications that save my child's life can also threaten it during treatment and for the rest of her life.  But this is the world we now live in and after-all, I am lucky to have her alive (I know this would not have been the case just 5 decades ago).

We of course choose to try to live in the now. And to me that is living in this perfect moment where she is drug free and healthy!  Her smile makes me forget what could be and sort of creates this euphoric sense of relief.  I mentioned to some clients earlier tonight though that you have this sort of shell shock after affect.  I mean no disrespect to our veterans in saying that as I realize it is two very different things.  But we now live in this world where many normal things will set off horrible fear.  A sniffle.  A tear.  Acting out.  Seeming quiet for too long.  All of these things are normal for a 4 year old, but they set me off with panic.  Circling the "what ifs." in my mind.  

The second book isn't given on diagnosis date because it is too much.  But now it is that time and it is here.  Since Nieva's treatment ended oddly I had to remind Jordon to ask for it.  I imagine most kids have a very celebratory last appointment where they take that last dose of chemo.  We never got that unfortunately, but the 31st of July was my scheduled end date for this.  So we asked for that book because it symbolizes the finality of this chapter.  

So here it is.  "The Second Book".  Laying casually on my kitchen table.  It represents triumph. The end of a saga in this world that is our lives.  And yet in its pages, it also spells out a lingering warning... like the grand cliff hanging finale of a novel.  There is potential for so much heartache and trial to come.  It symbolizes fear in some sense.  For that reason, today I choose not to open its pages.  Today I choose happily ever after.  

We all in some sense have two books to our lives.  That which has been and that which will be.  This moment is all that separates those stories and only God knows what is to come.  Let us not be too eager for the future.  There is so much to celebrate in the beauty of "this" moment.  It is easy for us to see now, but regardless of where you are and how horrible all may seem... Close your eyes.  Find the good.  The way we see our lives, has a hand in writing what's unwritten.  Your second book.....

A Very Important Update

I want to share this very important update.

There were many ups and downs.  Mistakes made and caught, miracles seen,  things that shocked many.  I need to recount those things in other posts where I can devote complete time to them (Be sure to subscribe at www.indieblossom.net to stay in the loop), but for now the news....

Nieva today was declared chickenpox free.  We are stopping her antivirals an believing her body is healed.  She has been on heavy antivirals to help with contagiousness and help suppress the disease, but her arms have still been covered in spots and we as parents have tirelessly been stuck in a rut of giving IV meds around the clock until last week when we stepped up the routine.  

Nieva was switched to a different anti-viral to see if it would suppress better.  We saw a doctor that works with frequencies in the body last Tuesday at the high recommendations of family/friends.  I also prayed like I hadn't prayed in some time (As well as did others).  Prayed that she could be free from this darkness over her. 

Her spots had been receding and the doctor agreed to stop the antiviral today.  Lab results showed her immune system is suddenly functioning, but is not responding to anything, which they say means there is nothing to fight.  

I feel the skepticism and worry after everything we have been through, but I choose to believe that this child has conquered this.  That despite not being able to finish 3 months of chemo her body will stay in remission until she can be termed cancer free in 5 years.  I believe she is healed fully and 100%.  Please continue to manifest this prayer for her.  She has been more full of energy these past several days than we have seen in so long.  She is a four year old girl again.  We look forward to enjoying the rest of the summer and hopefully making many more amazing memories with her.  We also hope to fall back into routine and get caught up with our lives.

If you are someone that supported us in any way... Doctors, nurses, clergy, family, friends, and even unknown amazing people that were helping or praying from here or afar.  There are no words for how gracious we are for this.  This has without a doubt been on top of her first horrible months of treatment, some of the worst and hardest days of my life.  Thank-you for believing in Nieva's healing.  

To God be the glory.  

-Amanda, Jordon, Nieva

If you are unfamiliar with Nieva's story, please read the below or check out caringbridge or Nieva's Facebook Group:

www.caringbridge.com/visit/nievarebecca

www.facebook.com/indieblossomblog

There is a long story and a short story.  I will try to keep this somewhere in between because as my husband reminds me, I am not capable of telling a short story (Love ya Babe!).  For about 11 weeks and nearly 3 months, Nieva had been battling to overcome the chickenpox.  As some know and some will not, this battle included the chickenpox virus (Also known as Varicella) disseminating.  This means it attacked her body internally.  Her lungs were failing, her organs in bad shape...  We went through 2 weeks in ICU, 9 days on ventilators to support her failing lungs, a week not sure as to whether she would come back to us at all, as she didn't speak, and then 2 months fighting for her body to overcome and render this virus dormant.  In that time she was on roughly 12 hours of IV therapy from home, around the clock.  Early on when she needed to be put under, we were told to say our goodbyes just in case.  Later, people told me they had asked staff and had been informed in so many words she was not expected to make it.  

This little girl was almost to the end of two years of treatment for leukemia.  Cancer treatment renders vaccines useless, weakens the bodies immune system, and makes the children susceptible through treatment and for up to a year after treatment.  Leukemia is treated 2-3 years.  I will do a post also explaining the difference that is huge in words like "remission" "cancer-free" "survivor" "done with treatment" and "cured".  Being termed cured for example for Leukemia in children would be 7-8 years from diagnosis date (5 years from now for us). 

Reminiscing on Hopes and Dreams

I think we all do this.  Parents.  When we find out we are expecting a child this whole new world opens for us.  I cannot help, but reflect on my pregnancy with Nieva.  I started a blog and posted over 100 entries over 9 months.  To say I was excited to be pregnant was the understatement of the century.  I didn't know if I was ready or what this new adventure was going to mean, but I knew I had never been happier!!  

An excerpt from the week I found out I was pregnant:

12/11/2009

"Since first grade, I have been a "recorder" and a "writer". Since then I have tried to journal, photograph, and scrapbook the bits and baubles of my life. This week, I found out I was pregnant..... According to medical dating I am about 4 and a half weeks pregnant. I know there are a lot of risks in the first three months, but I feel really optimistic that everything will be okay. I was told at one time that with my endometriosis I may never have children, so I feel incredibly blessed right now....."

I find myself wanting to relive that amazing journey, but now know I will never be able to have that same carefree experience.  Fast forward to 2.5 years old to the day Nieva was diagnosed and Jordon, Nieva, and my life was changed forever.  Jordon and I were so shocked to have been given this blessing only to be told such news a few short years later. The day she was diagnosed I added this to her blog.  A blog I sadly hadn't been able to keep up with much after she came into this world.  

View fullsize

May 1, 2013. 

"It saddens me in a lot of ways... that I was unable to keep up with this blog cherishing and highlighting the life of my daughter after being so diligent with recording my pregnancy and delivery. Despite anything I said anywhere or to anyone...I loved being pregnant. I was so excited to be a mother and to have this happy family. Unfortunately, as Ava came into the world I was struggling to start my own business and find my place in a world post college that was expensive and scary. So the days crept by... with me spending too many days in front of the computer and the camera, and not enough days swinging my child in circles, reading bedtime stories, or going on outdoors adventures. Today, May 1, was a strange day indeed. The ground was covered in snow like some some mystical warning of things not quite right. I took Nieva to the Dr. at 9:45am. She had been having a swollen face off and on for several weeks and dark circles under her eyes. She looked pale and tired despite her smiles and always goofy and playful demeanor. Yesterday we went into a pediatric dentist and he confirmed that a tooth abscess was certainly not to blame. I suspected allergies. So after we did a quick blood test, Nieva and I went to pick up an antibiotic for the third week in a row and I drove her to her daycare provider. About 30 minutes after getting back to the house Jordon called frantic.

'Are you home?' 

'Yes' 

'Good. Stay there.' 

'What's Wrong?' 

'They think Nieva has Leukemia. We need to get her to the doctor now.' 

From there the day is the blur..... The doctor took Jordon and I in a private room with Nieva and said a lot of things.... but the most haunting 'I need to make it clear that it is 100% certain she has leukemia.' 'It is cancer.' 'We will need to start treatment right away.' Nothing in a person's life can possibly prepare them for that moment.... where you realize there is a chance you will lose your daughter forever and you may have to watch her slip away with nothing you can do. I know I can be strong though. And that is what I hope to do. I want to hold her every last minute I am able until, I pray, she gets past this and we only have to have a memory of this terrible time. Please pray for Nieva. My greatest and most precious joy in this busy unpredictable and crazy world"

They had said 2-3 years of treatment was necessary.  Here we are.  Nieva had been scheduled to end her treatment this month.  We will never get that day to celebrate the end of cancer.  At this point it feel uncertain as to whether we will get to see that day we can see the end of chickenpox (8 weeks and counting... Still on IV antivirals 12 hours a day despite numerous attempts to finish)(See www.caringbridge.org/visit/nievarebecca for more info).

Well if you hung with me, thank-you for that.  That is all the reminiscing and I hope to now cut to the point of this entry.  :)  It is cliche to say "You never know what tomorrow will bring."  However, it is such a fact of life for us.  Sometimes I feel obnoxious how much I record and post photos of Nieva and her day to day.  I am not trying to act like I am an amazing super mom, or that she is this perfect wonderchild.  But I want her to know someday how hard I tried to help her live every day to the fullest, to see the potential in doing things differently, and why I have become anti Ipad/TV.  I want others to maybe learn through the guilt I feel for being a mom that was always "too busy" to do the little things with my child.  

I know we always worry we are not doing enough for our children.  Truly that was a worry I had and a day came I decided I didn't want to worry about it anymore.  I needed to make my life work with her as the number one priority.  Jordon and I do not make the money we used to.  We don't cram schedules like we used to, and we don't have expectations of each other and everyone around us like we used to.  Life goes fast enough.  So let's slow down.  Let's find flexibility. Let's notice the little things.  And let's reflect on what is really important.  

Moments. Memories.

Laughter.  Love.....

I am still photographing.  It is ingrained in me. I am just taking less weddings per year and less clients per year so I have time to put my passion into work and family fully.  These past few years have been hard.  I could not say anything to negate that fact.  But we have all grown through the bramble and are making our way into the sun.  

I was so excited about pregnancy.  Life is not always what we expect though.  Even our biggest blessings can turn to trials.  I am thankful for the lessons life has taught me through this all.  I hope others have been inspired to reflect in their own situations.  What moments can you slow down and find today?  

Reflecting back. Perspective.....

(Originally posted May 1, 2014)

Well... Today is a milestone of sorts. One Year since Nieva was diagnosed with Leukemia. I can remember back. Its eerie that late last night there were snowflakes fluttering since last year on this day a blanket of snow covered the ground. Not a normal May Day..... I remember looking at the snow. I even took a photo and published it to facebook with a comment. So odd. Nieva's name means "It's snowing" in Spanish. 

This has been a very hard year for us. That is not something I could contest or try to pretend about. You will hear people say through great sorrow and hardship, good will come too. We are incredibly grateful she is here today. Immeasurably blessed just by her beaming smiles. We are still dealing with a lot of issues that arose because of this diagnosis, but we also have gotten through a lot. People will choose to be impatient, not understand, not see the big picture at all times and I have had to come to terms and see that as okay. I have learned to have grace. That I am only one person. That many people are amazing and good... but some people will not understand. There is nothing more I can do than my best through all of this. Being a perfectionist... this has had a toll on me. But I am learning to accept it. And am thankful for life starting to have normalcy.

I have cut back side projects and been focusing more on reconnecting. I have been trying to be home more. Present. We are getting caught up on things. Having moments to breathe.

A year ago Jordon and I were two workaholics... working endless hours... Running every which way at 100 mph. Nieva was shuffled here, there, and everywhere. No stability. She wasn't happy. But it felt like with every hour or project added maybe we were closer to something better. Pay another bill, money for something else, another goal accomplished, making people happy. Its horrible how an instant can tear down your understanding of the world and last May brought into such perspective for our family how we both needed to slow down, yet at the same time how we were in need then more than ever. Since swimming through that paradox, we have reached some conclusions... there will always be bills. "Things" don't really matter like relationships and people. And relationships and people need to be nurtured. A sick child even more so.

I feel we have become closer as a family, and those priorities have realigned to where they always should have been. I feel a lot of people have reached out over the year trying to express "This isn't God's fault". I suppose it may be natural for people to assume someone going through hardship would place blame on God? I have to say though... despite what people may assume... I have not at any point been angry with God this past year. In fact, that is one of the places I have found the most peace and comfort. 

I truly believe God worked in me this past year. He worked in all of us. Helping and healing through this all. I do not believe God makes bad things happen. I believe we as humans have a long ways to go in caring better for this planet. Pesticides in fields and in the home of parents... Number one environmental link to children's cancer. Benzene in things like paint.... Number two link...... Both of us grew up bordering corn fields sprayed with pesticides... Today our home borders a corn field..... I also did a lot of painting before and while pregnant... There is no way to know for sure what caused her cancer, but there is a need for a paradigm shift in this world overtaken by dangerous chemicals.

Where is Nieva in all of this? I don't think in a bad place. In fact, I am not sure she really understands on a lot of levels. She will be 4 in August. She is still just a baby in my eyes. When she doesn't feel good, she doesn't feel good. When she can't sleep, she can't sleep. We take it a day at a time. And she understands things and accepts them a day at a time. All in all she is wonderful. She is a jokester, happy go lucky, and sweet natured. I see great things from this child. A large personality in her tiny body. SO much love.

We continue to pray for Nieva's continued healing. And we pray that the next year and 7 months will pass without incident for Nieva and be the end of her personal suffering with cancer. In closing, thanks again to all who have lifted us up, helped, prayed, and so forth. Please continue praying. We are blessed by so many of you.

Find your Light

www.amandasimagery.com 2015

There is much going on this week with Nieva.  Fundraisers, Fashion Shows, Food promotions, Radio Interviews, Television interviews... All in honor of many children area wide including our sweet Nieva.  I will update on all of that soon too, but tonight I needed to share a peaceful post.  I never want for this to be a place of negativity.  I want to to be raw, yet always as positive as possible, because I feel that attitude is what helps us as humans to endure.

There is so much to hate and anger in this world.  And we can choose to encapsulate these entities and let them live inside us as bitterness, resent, or pain.  

Taken by Lana Snyders - Edited by www.amandasimagery.com 2015

But I don't want to simply float through this world exuding despair. We have experienced a lot of loss (more specifically my father-in-law Tim, my friend's sweet baby Edith, and Jordon's Uncle Rick) these past years.  Our daughter's battle has had to add to those stresses and disappointments for many close in our lives.  Despite our situations I know one thing.  We endure.  And I don't want my spirit to suffocate the joy in others.  Ever.

There is a time for all things.  We must take the good with the bad.  And we must find the light when its cold and dark. We must not give up. 

One small flicker can turn into a wealth of warmth.  Can we be that flicker?  Can we find our light and pull people into it?  Help them be part of something greater?

We can.  

When the worst of days come... heavy, stagnant, suffocating...  We must push upward for that light.  And we can.

Find strength in the quiet or the chaos.  Realize its been here this whole time.  An ability to stand up and choose to try to smile today.  

Find the light. And then light your world.  <3

Blessings,

Amanda

Flowers in a Crown -Ava's Song

I have written poetry and songs since a young age, but the inspiration often doesn't hit unless I am feeling the hardest of emotions.  In the weeks following Nieva's diagnosis I was feeling those raw feelings and a lot of writing followed.  This is a song I wrote in response to the fears and emotions surrounding her losing her hair.  Such a trivial thing in the long run, but created such a powerful narrative in my thoughts.

 

My daughter Nieva, 4 years old.  Taken by Rache Ebel of Kealoha Creative

Flowers in a Crown

Copyright Amanda Boer 2013
May 11, 2013

She is the one
That leads 1000 rays
Of sunshine sweet
Through darkest of days

Smile little sweet
With flowers in your hair
Tender little feet
tender little prayers

Smile little sweet
With flowers in your hair
Today today
wear flowers in your hair

We know the fall is coming
And you’re more than a blossom
You will beat it running
And keep us all but solemn

And you’ll say 
"Smile Mama sweet
the flowers all fell down
tomorrow, yes tomorrow
let’s put flowers in a crown
I may not have my hair
Let’s put flowers in a crown".

Patience is a hardship
And pain is but a stone
Know I hold your hand my sweet
We don’t do this alone

And she’ll say "Smile Mama sweet
I love the flowers in my crown
The flowers in my crown
Yes the flowers in my crown".

Perspective on Vaccines by a Cancer Mom. Seeing the Gray.

We live in a world of gray.

Many shades of black and white.....

There is nothing in my adult life that troubles me more than those who cannot see the gray in deep issues.  We should vaccinate...  We shouldn't vaccinate... Black and White... This just is not the case with anything, let alone vaccines.  I feel I have some unique perspective.  You see I identify as being one of those "crunchy" moms. Granola, hippie, natural... you get the point.  I had heard the horror stories about vaccines and felt strongly about them.  We chose attachment parenting, baby wearing, nursing, etc.....  A common movement among mothers today.  I was not sure I was okay with the risks of the vaccines when a lot of these diseases seem to be eradicated diseases.  And I know this is a common thought process.  I also have met numerous moms who believe firmly that vaccination is the reason for a serious medical issue they experienced or are still experiencing with a child. It seemed very scary as a first time mom.

The flip side to this is my current reality.  Years after I had to make these decisions about vaccines, I am also the mother of a radiant 4.5 year old.  Big blue eyes, adorable blonde curls, and personality for miles. She is my baby.  My only child.  A child in treatment for cancer.

At 2.5 years old our worlds were turned upside down when she was diagnosed with Leukemia.  Did you know 1 out of 285 children (American Cancer Society) will be diagnosed with cancer before the age of 20?  Here we were... a statistic.  I had questioned and fussed over every last vaccination my child did or did not get, but there I was... the mother of a child who was going to deal with issues of zero immunity and my child could NOT be vaccinated until her 2-3 year treatment had been finished for a year.   My reality now... my child is living in a small city with a confirmed measles case and cannot get her second vaccination shot as a cancer patient. My child got her first measles vaccination (with much hesitation from mom), but that does not guarantee her immunity and she cannot get her second shot.  Realization that cancer impedes your access to vaccines when you suddenly need them. That is scary my friends.  And believe me... noone thinks this is going to happen to them.  So now here I am.  A paradox.  I am a crunchy mom who was very wary of vaccines, that is now scared to have my children around children that are not vaccinated.  How the tables can turn.  Welcome to our unfair world of gray.....

Yoga at Morro Rock, California  January 2015

When my daughter came to the age that she needed vaccines there was a lot of hysteria going around in the realm of vaccines being dangerous. My husband is a pharmacist and has his doctorate in pharmaceutical science.  We both wanted to make an educated and informed decision on whether or not Nieva was going to have vaccines administered.  Since my husband works in a field where vaccines are administered regularly, and I know him to be conservative on anything that can cause toxicity, I decided to trust what he decided was best. We analyzed and discussed each immunization.  

This is where the gray comes in.  Turns out this wasn't easy.  Our research brought us to the decision and to the knowledge that no matter what we do there is some risk involved. For the vast majority, people will respond as they should to the vaccines and will not have any side effects or problems from taking them. Because they took the vaccines, it is less likely they will have life-threatening conditions later in their life. For this reason, I completely understand the majority of America's stance on this issue. It does however stand to reason that a lot of people still have claimed serious problems from taking the vaccines.  Down to even specific lot numbers of vaccines. It is not a perfect system, and it is so hard to know who will be the next statistic.  

We decided, for example, to not do the chickenpox vaccine. The reason being that it is not typically a deadly or dangerous virus.  Not getting chicken pox as a child can also actually result in a harsher sickness as an adult. It is interesting to say now though, we are dealing with a child who is at higher risk of complications from the chicken pox than a normal child.  Cancer treatment often brings their immunity down to zero for periods of time.  But even when immunity is "normal," the risk for it to decline is worse than normal children,.  Due to this, risk of complications or death is greatly increased.  Fact... most children that pass away while in treatment for cancer do not die from the cancer itself.  They will die from a secondary medical issue, or from a side effect of their treatment. Any kind of contracted illness that a normal child may handle with ease, an immune compromised child could have serious complications with. 

I am now realizing our decision to not treat our child with the chickenpox vaccine was something that could hypothetically cost her her life. In our instance, if she would have contracted it or maybe if she still does before treatment ends, her counts could drop to nothing and the littlest thing could cause hospitalization.  That being said, I as a mom worry... who will she get chickenpox from?  Children that have not been vaccinated could be the children that cause serious complications or death in our own child. 

The gray continues on though.  I realize it is possible we could have decided to do all of our vaccines at once instead of spreading out the ones we chose to give her, and she could have had a serious complication from the vaccines. We don't know.  As with everything in life there are risks and benefits to weigh. 

We play this game called life and there is no way to know. People belittle parents that know they saw the light leave their child's eyes after getting a vaccination.  We do not have the right to tell that parent they are wrong or there is no way that is possible.  We are not that child's parent.  We were not there.  So I cannot cast blame on that parent for not vaccinating future children.  

Every issue conceivable in this world is gray to some extent. There are always multiple perspectives, and it is important as individuals that we weigh those perspectives accordingly, despite our own background and biases. So please when you argue against vaccinating your children, remember the children with cancer.  Children with vaccines may shed live virus for three weeks to children with weakened immune systems.  Children without vaccines are at risk.  I could have never guessed that I would be the mother this would happen to.  We don't live in a perfect world. Our world is broken and complicated. I do not judge the mothers who did not vaccinate, or still choose not to vaccinate. I am a mom and I was there.  But when it comes to vaccines... this is our food for thought.  This is my story of gray.

Shall we just Fly, or Shall we Soar?

John Steinbeck said:

"A journey is a person in itself; no two are alike. And all plans, safeguards, policing, and coercion are fruitless. We find that after years of struggle that we do not take a trip; a trip takes us."

Time is a hard concept for me.  It never seems to have passed quite as fast as it has.  It flies and it blurs so quickly.  I look back at photos and it seems so recent.  Last year, 5 years, 10 years.... Nieva's baby photos and me much more vibrant, happy, and strong.

I found myself today reflecting on 10 years in particular.  Maybe it is that I turn that dreaded 3-0 next April, but I have found myself thinking a lot about what I have done over these past years.  Recounting this proverbial flight, I thought of the negative first of course, because we are always too hard on ourselves.  That came with looking in the mirror and being upset with myself for an extra 15 pounds, lots of lumpy bumpy, white sun deprived skin, and bouts of stress-induced acne.  Well fun.... 10 years isn't looking radiant.... I need to pull this mess together a bit more before 30.  Don't need any mid-life crises on top of all the other crazy.  ;)

Then there is my business.  After 10+ years of loving photography to 5 years of working very hard to build my name, clients, income...... and then realizing finally now how much I have missed in those 5 years again by over booking, over-stressing, and trying to be the best I could be.  A give and take like college...  I giving 5 years to school.  Working hard on my grades and passionately learning so much.  Getting to study abroad a semester in England, travel to a dozen different countries, and start learning French, expand my musical knowledge.... I do not regret the learning, but I admittedly felt the blur as I signed those student loans.  They are here now.  This desire to make something of my degree and see success drove me and cost me a lot of moments with family and friends.

Time lost with my family.....  I flew alone.  Pushed away not just family, but friends, and even my soul-mate and daughter as I burrowed myself into a thought process of career success, material desire, and maybe worst of all the wish to have everyone approve of me and everything I did in my process.  And storms came as they do.... Having experienced cancer over and over through the loss of my father-in-law, several family passing, and then our own daughter's current battle with Leukemia.  It begins to put into perspective the weight of relationships and what is truly important.  How delicate this world around us is.  How illness and death will change everything.

I had been raised so lucky...  All 4 of my grandparents are still living and I get to see them frequently.  I knew great-grandmothers and a great-great grandmother in my life.  From the age of 4-18 I experienced no loss.  My family was all close and "normal" (Well mostly ha!).  We went to church.  I painted, sang, crafted, learned, and dreamed.... Oh how I dreamed.....  Maybe I did too much of that? ;)

Despite those first 18 years, I feel like I have spent 10+ years since in a desk or on a computer.  So many great memories, but so many dark places too.  Fighting depression, anxiety, self-doubt, and rejection. The realization was harsh and sad.  I need to see something brighter.  The realization that its been about 10 years since I have completed art just for me... 3-4 years since I have sat down and knit or crocheted or made jewelry.  I go months in between seeing family that lives a short drive away and months without exploring, making an effort to do or see something new, or reach out to friends... I feel I created a successful business I love and an art I have done well with, but today is the day to reanalyze.  I sat down and set new lower limits for what I will accept this coming year.  So I can give clients and my family more time and energy.  That is at the cost of income, but I am okay with it.  I don't want to fly tirelessly.  I want to glide... soar... see the smiles along the way.

So this is the beginning I suppose.  A realization that experiencing the journey of life is worth so much more than the final destination.  What is success?  What is our final destination?  Is it making more than your colleagues?  A better house or car?  More social scenes... more stuff.....  What is all that in our final moments?  In seeing the final moments of those we love?  What if your child or spouse was gone in the blink of an eye?  Would you wish you had looked in their eyes a bit more?  A bit longer?

If I want to look back at myself 10 years ago I believe I know what I would say.  SLOW down.  Relationships are more important than things.  What is success?  We all have different definitions and mine have changed this year.  Success is being respected for your spirit and actions.  Success is being rich in laughter, and full of love.  Success is accepting that no-one is perfect and that we are all on our own journey.  Success is respecting all life by emulating the teachings of Christ.  Success is a happy home (regardless of its size or the things in it).

This year was a roller coaster.  A year darker and more damning than anything I have ever experienced.  But there was that light.  There is always light.  I had to feel everything along the way.  The aching and horrible pain of anxiousness and wishing it wasn't them.  I am thankful for that light.  It pulls you to the surface again, and for me that light is also realization.  Every day I look at my daughter and feel thankful for another day.  It is hard to be away from her.  I am aware of her in a way I never was because of I was too busy to be.  The idea we could have lost her in the mess of my own self-pursuit.  The idea I still could lose her.  This is my life now, and I am stopped in my tracks knowing it could always be worse.  It could get worse.  But I am gracious for now and am trying to let go and trust it will be okay.  This was my journey, and is my journey.  I was happy in the beginning and I have finally found myself again.  This is our lives right?  Our only one.  Fly well.

<3 -A

Bold, Blooming, Beautiful... Indie Blossom

Something new is in the works.  I am an old soul, with a mind that does not stop whirring.  I am enamored by the creative arts and soothed by tea, laughter and learning.  The past few years have been a journey for me, for my husband, and for my sweet daughter.

Over the past 5+ years I have graduated college with my B.A., married my long-time friend, opened my own business, had a child, had said child diagnosed with Leukemia... reanalyzed every thought process I had ever had prior, and ended right here... at this blog.  A new beginning as our daughter heals, as my views of life and this world have been shattered and reconstituted into something so much greater than I could have believed possible prior.  Seinfeld was a show about nothing.  This is a blog about nothing.  It is just glimpses into my dad to day.  Professional photographer by trade I will share personal projects, dietary epiphanies (We are vegetarians), Decluttering adventures, crafting, travels, hopes, dreams, poems, and whatever else comes to heart.

I cannot promise profound... just real... just me... and this crazy life that is mine.

Love & Light

1.