In mid-April I took a trip to Falls Creek Falls to a workshop called Forest + Falls that I randomly found on instagram. I didn't know a single person, had never been to Tennessee, and had no idea what to expect other than I knew I'd be surrounded with artists that I would learn from and hopefully build relationships with. My intentions were to learn about relationships in photography, and bringing that out in my work. I wanted to learn from other's experiences and apply their learnings to my style. What I DIDN'T expect was to leave there with a completely different point of view of the world, and my part in it.
This lovely human being put it directly in my face, the reality that they live on a daily basis, and how infrequently their story was told. They are a photographer, a mom, a writer, a public speaker, an activist, non-binary, queer, a person of color, a partner, a lover, a teacher and a new friend to me. They taught me that it's okay to have anxiety, it's okay to have a mom-body, it's okay to not fit in, it's okay to feel a way that those around you don't understand. They taught me how important it is to look honestly at myself and my part in racism, at my part in the things in this world that I don't like. To work hard, and speak up to change those things. They reminded me that skinny, white, beautiful women aren't the only people that want and need their stories told. They encouraged me to find beauty outside my norm, outside my comfort zone, outside my 'target client' and my price range. It sounds SO superficial that I even have to say that I hadn't thought of these things, but it's true. We get so caught up in what's comfortable to us, and what we expect, that we forget to look outside of that and explore what else is out there.
I had to acknowledge my role as a privileged white woman from a two parent home with many opportunities. I had to realize that I have two choices, take this knowledge and ponder it, or I could actively talk about it and live the changes I needed to make. I could post on social media about unjust situations I saw, I could approach people of color in my town and literally just talk to them and learn about them and protect and love them. Create a space for them and use my privilege as a voice. I could learn what is offensive, what is annoying, what hurts. I could work to understand why. I could create a space where people are safe to talk about their feelings and be themselves and feel safe. I could teach my kids about same sex couples, and people that don't identify with their physical birth gender. Teach them we're all the same on the inside, and the only thing that can separate us is hate and judgement.
So with this blog, it's obvious I've chosen to speak up. I'm sorry if this blog upsets you or is uncomfortable... but that may be a sign that you, too, have work to do.
Thank you so much to Margaret, you'll never know the difference you've made in me.
Check out Margaret's Work!
For the past, gosh, since the very start of my photography career, I have had the honor of photographing the Erbes children and family. Starting with 'Shy Landon' as one of my toughest sells at just 3 years old. Then little Lillian came into the world and I documented her whole first year, and each year since. I love her spunk and sass! Then finally, Mr. Grayson. Those blue eyes of his totally melt me. Grayson has had quite the battle the past year and a half, and I wanted to bring awareness to his fight. Please read Grayson's story written by his superhero mom, Sara, and see resource/info links and where you can donate at the bottom. <3
Where We Have Been…
In early March of 2016, at just 10 months old, we noticed that Grayson’s eyes started moving back and forth in a chaotic rapid manner. We made a trip to our pediatrician’s office looking for answers. She referred us to an ophthalmologist for further evaluation. The ophthalmologist performed an eye exam on Grayson and even witnessed the eye movements, which had increased in frequency since we first noticed them. The doctor ruled out a couple different things and confirmed that there were no tumors behind his eyes. We were more than relieved that there was no cancer, but we left ophthalmologist’s office without a diagnosis.
Over the next couple weeks, Grayson’s condition declined. His eye movements were increasing in frequency, he wasn’t eating much, he wasn’t sleeping much, he was fussy and wanted to be held all the time. We needed answers and needed them ASAP.
On Sunday March 20th, 2016 we headed to the University of Iowa’s ER department. After a short ER visit we were admitted, but still didn’t know what was wrong with our baby. The doctors told us they would feel better if they could do some tests to see what could be causing Grayson’s eye movements.
The next day brought us an introduction to our neurologist. After many tests and consulting with other doctors, on Tuesday March 22nd, she diagnosed Grayson with Opsoclonus-Myoclonus-Ataxia Syndrome aka OMAS. OMAS is a rare neurological disorder that affects 1 in a million individuals worldwide. The immune system of someone who has OMAS views the brain as a foreign body and therefore attacks it, often times resulting in brain damage. The eye movements we had been seeing, were visible signs of Grayson’s immune system attacking his brain. Grayson eventually lost the ability to cruise around furniture, because he could no longer pull himself up. Crawling became difficult; he couldn’t crawl without falling over. He lost his verbal abilities and communicated with us by smiling. It was heartbreaking to watch our son lose his milestones that he had achieved. There is no cure for OMAS.
50% of OMAS cases are a result of Neuroblastoma, which is a form of pediatric cancer. Since the possibility of cancer was a concern, our neurologist referred us to the pediatric oncology department at the University of Iowa. Our oncologist explained that a small percentage (2-3%) of Neuroblastoma tumors can cause OMAS; so she scheduled Grayson for a CT scan to see if he had a mass somewhere in his tiny body.
On Thursday March 24th, 2016 Grayson had his CT scan and we were given the results that afternoon. Our oncologist, as well as a pediatric surgeon, met with us to give us the details of the scan. Mostly all we heard them say was “blah, blah, blah,” but the one thing we managed to hear was “a mass was found.” Heartbreak, fear, anger, and confusion… emotions that I didn’t know I could feel all at the same time.
Within a 48 hour time frame, we had been told that our son had a rare neurological disease, that didn’t have a cure, and on top of that he had cancer.
Where We Are Now…
Grayson is now a very active 2 year old. We are 15 months into Grayson’s journey against OMAS and Neuroblastoma. He’s had surgery to remove 95% of the tumor that was wrapping itself around his spine, a port was placed to administer his infusions. Various testing; including MRI’s (every 3 months), a CT scan, MIBG scans, x-rays, echocardiograms, lumbar puncture, bone marrow aspiration and ultrasounds. His treatment has included steroids, chemo IVIg & Rituxan. With medication we’ve managed to control Grayson’s OMAS symptoms and his Neuroblastoma is stable. We’re not sure when he’ll be off medications for his OMAS, but our goal is to eventually wean him off of all meds; which is a slow and grueling process. Grayson is our little warrior and we are so proud at how he’s handling everything that life has thrown at him.
More Info on OMAS & Neuroblastoma
Opsoclouns-Myoclouns-Ataxia Syndrome: https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
OMSLife Foundation – dedicated to raising awareness for OMAS, research and assisting patients and families fighting OMAS: http://omslifefoundation.org
University of Iowa Dance Marathon – a student run organization that provides emotional and financial support to pediatric cancer patients and their families treated at the University of Iowa Stead Family Children’s Hospital: https://dancemarathon.uiowa.edu
Beat Cancer Today – Their mission is to “create awareness of childhood cancers and to provide financial support for childhood cancer research, and for patient and family support programs.” http://beatcancertoday.storenvy.com/our-mission
Please keep Grayson and his family in your thoughts and prayers as he continues his journey!
Welcome to the place where you remember what it's like to be a child, to imagine, to dream. A place where true love, prince charming and happily ever afters really do exist. Take off your shoes, cuddle up with a cup of coffee and cozy blanket, and let us remind you that life is beautiful. It is kind. It is whimsical. It is delicate, and warm, and sometimes even miraculous. Please forget about the laundry, the dishes, the deadlines.