This past week, Danny ended his fight with Tay-Sachs. In honor of him and his courageous fight, I wanted to repost this blog:

I’ve thought a lot about Danny since my photo session with him and his family Dec 13th. He has Tay-Sachs Disease, which you’ve likely never heard of . Tay-Sachs, according to the National Institutes of Health, is:

“… a rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.

The most common form of Tay-Sachs disease becomes apparent in infancy. Infants with this disorder typically appear normal until the age of 3 to 6 months, when their development slows and muscles used for movement weaken. Affected infants lose motor skills such as turning over, sitting, and crawling. They also develop an exaggerated startle reaction to loud noises. As the disease progresses, children with Tay-Sachs disease experience seizures, vision and hearing loss, intellectual disability, and paralysis. An eye abnormality called a cherry-red spot, which can be identified with an eye examination, is characteristic of this disorder. Children with this severe infantile form of Tay-Sachs disease usually live only into early childhood.”

Sometimes I cultivate a distaste for definitions. Yet, sometimes they are necessary to help us understand. Danny is so much more than the grouping of words that describe his conditions above. I thought about him frequently during the holidays and again on his second birthday, December 31st.

I can’t tell you a lot about him or his family. I entered their home to create a memory. I didn’t ask, not because I didn’t care, but because I didn’t feel they needed to relive their journey to the stranger with a camera. They just needed to remember this Christmas, this birthday, this moment.

I can tell you what I saw while I snapped image after image and what I felt when I left. I saw a family decorated with joy and resilience, the way their tree was adorned with ornaments. I felt the presence of moments hanging so fragile and so beautiful, like the bright, glass globes that dangled from the limbs and when I left, I was renewed in the challenge to decorate my life as a Christmas tree, everyday.

Please consider making a donation to support families affected by Tay Sachs and to benefit research development. (Click here.)

The post appeared first on Lux Summit Studio.

Several months later an image of an ultrasound photo appeared on her Facebook wall with TWO tiny jumpin’ beans (that’s what they always look like to me at first)! Count em’, TWO! I was elated and knew I had my work cut out for me.

What transpired was a year of shenanigans complete with brothers clobbering brothers, boys clobbering parents, a tiny bit of sleeping, a small family reunion, some sock throwing, mud mucking, cake smashing, a few screams and, of course, the milliseconds in between the madness which is when you get that perfect shot.

As I prepared to leave the final session (the one-year, cake smash session), Andrea told me they were moving. I was sad to see them go, but elated I could be apart of the memory making that they will carry with them wherever life takes them.

The post appeared first on Lux Summit Studio.

“… a rare inherited disorder that progressively destroys nerve cells (neurons) in the brain and spinal cord.

The most common form of Tay-Sachs disease becomes apparent in infancy. Infants with this disorder typically appear normal until the age of 3 to 6 months, when their development slows and muscles used for movement weaken. Affected infants lose motor skills such as turning over, sitting, and crawling. They also develop an exaggerated startle reaction to loud noises. As the disease progresses, children with Tay-Sachs disease experience seizures, vision and hearing loss, intellectual disability, and paralysis. An eye abnormality called a cherry-red spot, which can be identified with an eye examination, is characteristic of this disorder. Children with this severe infantile form of Tay-Sachs disease usually live only into early childhood.”

Sometimes I cultivate a distaste for definitions. Yet, sometimes they are necessary to help us understand. Danny is so much more than the grouping of words that describe his conditions above. I thought about him frequently during the holidays and again on his second birthday, December 31st.

I can’t tell you a lot about him or his family. I entered their home to create a memory. I didn’t ask, not because I didn’t care, but because I didn’t feel they needed to relive their journey to the stranger with a camera. They just needed to remember this Christmas, this birthday, this moment.

I can tell you what I saw while I snapped image after image and what I felt when I left. I saw a family decorated with joy and resilience, the way their tree was adorned with ornaments. I felt the presence of moments hanging so fragile and so beautiful, like the bright, glass globes that dangled from the limbs and when I left, I was renewed in the challenge to decorate my life as a Christmas tree, everyday.

Please consider making a donation to support families affected by Tay Sachs and to benefit research development. (Click here.)

The post appeared first on Lux Summit Studio.

The post appeared first on Lux Summit Studio.

Austin is a party on a Thursday afternoon. It’s a warm stroll having touched down from a chilly town far, far away. It’s a pirate greeting you at the threshold of a bar, but not a Disney World/Pirates of the Carribean kind of pirate, but an ironic one, as only Austin could produce. He’s just dedicated enough to the role to grow an outlandish beard and riddle his body with tattoos, don a pirate tee-shirt (think tuxedo tee-shirt, but a pirate.), but not serious enough to run an attraction at any major theme park…thank God. Austin is that same pirate insisting you pop in and the first round’s on him. It’s the subsequent and inevitable rounds you gladly pay for after, because the fun colonizes. It’s the music pulsing your ears at all times. It’s the strangers that fast become friends for just that moment in time. You hop in a photo booth together. You share a shot. You talk sports. You hop on the bar and dance and suddenly, it is over. The clock has struck midnight. The bar is a pumpkin and you must move on, but the ball – the brief snippet of time where chaos and kindred spirits collided; that was Austin.

The post appeared first on Lux Summit Studio.

When I get into a pool I have to ease in, adjust to the water, brace myself. I watched these kids charge forward without hesitation or withholding one piece of themselves from the happiness that was possible in that moment.

The post appeared first on Lux Summit Studio.