Made of Gray

Life Expectancy

Photography Beyond SNHolly D. GrayComment

When I started thinking about Life Expectancy and the ways in which families are told they will outlive their loved ones; my interest fell on the stories.

I’ve found that many families want to know the prognosis… a plan and others don’t want to know at all. Then there are those families that are given a length of time by a medical professional without being given a choice whether they want that information or not. Of course, these conversations come after birth, trauma, surgery, MRI’s, test results, etc., but the shock and grief regarding the loved one holds tight no matter how the delivery occurs.

Our daughter had many specialists weigh in on her life expectancy. My husband and I wanted to know, we wanted to plan as best we could. In general, we were told that she would die by the age of three. The rare birth defect, prematurity, the disheartening news of her first MRI, the IV nutrition that was rapidly damaging her liver, constant surgeries and new diagnoses filled the first two years with our precious baby. When she turned three we took a deep breathe and keep pushing forward. Who was that person that said three would be the end? It doesn’t matter now. We are proud to say that Caleigh turned TEN last August.

What allows or leads a medical professional to put a number or future ability on a life? It could be experience, research or ego. It could be the certainty of a diagnosis or a way to lead the family towards preparations and letting go. My quest isn’t to find out why the life expectancy was given, my interest lies in the families, the stories, and the journey.

Over the past year, my artwork has shifted toward a social practice, particularly involving others in the collection of materials or information. This practice involves the act of collecting and documenting through language and visuals. My recent projects One Day and Fundamentally Prime are examples of the collecting and collaboration with others. Of course, my heart is connected to the community of medically fragile children and their families, but there will always be a larger story to tell.

So what is your story? I’m collecting the life expectancy estimates that you were given regarding your baby, child, husband, wife, daughter, son, mother, father, etc. Tell your story or memory and it could be included in my new book and art project Life Expectancy.

Click here to be taken to the collection form

For more information: hollydiongray@gmail.com or hollydgray.com

 

 

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One Day

Photography Beyond SNHolly D. GrayComment
Kendall, Age 8, Collected 11.29.16

Kendall, Age 8, Collected 11.29.16

I write letters, rally, protest and meet with those that make decisions about our daughter's care on a local, state and federal level. For me though, my new project, One Day, is my brand of advocacy. Looking at details differently, I love to bring a narrative to individuals in a unique way.

When Caleigh was born prematurely with the rare birth defect, Gastroschisis, my outlook on life shifted dramatically. I became more aware of everyone around me. The naive bubble was gone. My creative process stalled for many years as I tried to comprehend our new life with a medically fragile child. The barrage of diagnoses and surgeries didn’t quit when we rolled out of the hospital and it’s still an adjustment to this day. Finding time and energy to feed my needs was and is a huge challenge.

In 2015, I started to save and collect the massive amounts of plastic medical waste that we had been recycling and discarding. I knew that this waste was important to me, but back then I didn't know why. The shear amount of it interested me.

When I started my graduate degree last year, I was able to work through the process of collecting with my professors and other important artists in my field. With my first year of graduate work complete, a refreshing research trip to Italy and two years of collecting; I have clarity on the waste material and the importance that this project will have in large numbers.

Here's where you come in!

Volunteers are asked to collect ALL waste material used in the care of their medically fragile family member(s) during a 24-hour period. One Day. This could include recyclable material, packaging, feeding supplies, and medications. As well as needles, vials, port or central line care, suction, and trach supplies. Diapers, pull-ups and wipes are excluded.

No amount of material is too small or great and this is definitely not a competition. As a narrative, I know how surprised I was by how much we discard each day.

At this time, I’m asking that medically fragile kids, 21 and under, participate. At a later date, I will open this request to adults.

WHY?

The underlying purpose for this very important and ongoing project is to give a voice and a visibility to an often overlooked minority. With ideas of consumption, identity and both personal and political advocacy; I envision an increased awareness for our community.

By participating you will receive a digital file of your One Day project to share throughout social media, letters to your representatives and others. Basically, whatever you feel like! You will also receive 1 - 8x8 artist proof of your collection.

Writing and putting things out into the world has power. I have lofty goals that include hundreds of participants from all over the world and I believe that we will get there. I need your help, please share with your friends, FB groups and family to get the word out!

Questions? Email me @ hollydiongray@gmail.com

Visit hollydgray.com/one-day for more details

 

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A Letter to Caleigh on Her 10th Birthday

Raising the Rare ChildHolly D. GrayComment

Dear Sweet Caleigh, 

Today you turn Ten. You're a pre-teen now and you are so completely excited to have that title. I've spent the last month trying to convince you to stay nine forever. As stubborn as ever, you jumped ahead another year.

How is it possible that a decade has passed? I'm still trying to wrap my brain around it. You blew past early predications and continue to stretch the rules. You break barriers and will forever be our strong girl. You push when Daddy and I are tired and ready to quit. You push and survive when your body is tired and complicated. You keep everyone on their toes at all times. You made me a mom ten years ago and you continue to make me a better person everyday. 

Every time I look at your sweet face, I see my tiny fragile NICU baby. Your flowing curls, soft pale skin, and beautiful brown eyes amaze me. I see all the knowledge and wonder in those eyes. Your'e the smartest kid I know. As your mom, I feel every feeling you have. Each movement, expression and sound speaks to me more than any verbal words could reach. I feel that we are connected on a level very few understand. I know when your sick, sad, overwhelmed, exhausted, happy and excited without a single word. You are growing up so unbelievably fast, but we will always have this unwritten connection. 

Mommy and Daddy are forever proud of you. Keep giggling, sassing off and moving mountains. We love you, pumpkin.

Happy Birthday! 

I LOVE you, 

Mom

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Spring 2017

Raising the Rare ChildHolly D. GrayComment

How can it have been six months since I last posted? Maybe this is the season of Caleigh's blog? Maybe this is the growth and privacy we all crave in an over saturated internet life. 

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The truth is that graduate school is more responsibility, time commitment and emotion than I had envisioned. After completing the first year of my MFA program, I left for 16 days in Italy. I wrote a proposal and it was accepted giving me the grant money to travel with. I've never been away from Caleigh that long. Cue the Mom guilt, but it turned out to be a magical trip with art history, gluten free food, architecture and cultural growth. I took more than 2000 photographs and I can't wait to edit them. With amazing supports here at home, Caleigh did great while I was gone. We are so lucky to have a team of people in place that care about her wellness and happiness the way that they do. 

Now for the updates...

This April we traveled back up to Boston. The CAIR team loved how well Caleigh is growing, absorbing nutrition and thriving. The short bowel syndrome surgery of last summer continues to be a success. Our memories are fading and life is continuing to move on from that time. Caleigh still takes a one week round of antibiotics for bacterial overgrowth every month. They've cut her calories by 5% and have suggested trying to wean her off of the Nexium. We haven't started the wean, but summer looks like a nice place to start. 

Endocrinology is still watching Caleigh's growth, bone health and puberty with no changes. 

We saw orthopedics in Boston for the first time this April. We've known that Caleigh will need hip surgery for several years now, but we wanted a second opinion on the procedure. What we discussed varied from the options here in Texas. We have an appointment this June with our local orthopedic doctor to go over the differences and help us make a decision on the location of the surgery. Boston would look like a month stay and home, well, it would be at home. It was suggested that the surgery be complete within the next 6-9 months. 

That's Boston. We went to a Red Sox/Cubs game while we were in town. The weather was perfect while we were there and Caleigh loves traveling to Bean Town. She loves talking about Boston and it truly is an adventure to see her doctors. She doesn't dread it and neither do we. It's a warm comforting feeling. 

Fun highlights that have happened since December:

1) Caleigh received her second powerchair. This is the M5 Corpus. It's fancy, smooth and fast. It had been 7 years since Caleigh got her first chair. We had so many issues with joystick access and over the years tried many different solutions without much success. The new chair has its own challenges so far, but Caleigh loves to move on her own no matter what that may look like. We even have a large hole in our wall courtesy the new chair and its 9 year old driver. 

2) Caleigh played Miracle League baseball again this Spring. I have a feeling that this will be a constant in our lives for a long time. She loves everything about it except the sun in her eyes. 

3) This winter was illness free! We had such a mild winter here in North Texas and Caleigh stayed well the entire time. 

4) Caleigh continues to go to horse riding once a week and Dad has really picked up the transportation and volunteering portion of that activity this year. Go Dad!

5) We wait, discuss and hold our breathe on legislation, current bills and our crazy healthcare system. Big changes started back in November with Texas contracting out children's Medicaid. It's been nerve racking to think about. Trump's proposed Healthcare bill that passed the House would be devastating to Caleigh's medical care, but I try not to think about it everyday. We will take it as it comes. We've experienced cuts to Caleigh's MDCP budget, and therapies so far. I'm hopeful that more doesn't come our way. 

Things have moved fast and typical with no hiccups during the first part of the year. We're sticking around the house this summer working on projects, swimming and relaxing.

I'll say it again on here, but Instagram is my method of social media. A quick photo of our girl or anything art related seems to be what I can put out there right now. Two years and counting until my degree is complete. 


ONE DAY

An ongoing series of waste collections from medically fragile individuals over a 24 hour period. 

Last Fall I started the One Day Project. I'm asking those of you with medically fragile children or family members to collect the waste from a 24 hour period and send it to me. With this shipment I then curate a photograph and installation. I will send you a print of your One Day and postcards that can be mailed to anyone you chose including your representatives. My goal with this ongoing project is to have hundreds if not thousands of these portraits. Please visit my portfolio for more information on collection and shipping details. 

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