When Ethan’s grandmother, Judy, called me inquiring about my Portraits with a Purpose sessions, she had two reasons for wanting portraits. Judy is the legal guardian of her 19 year old grandson who is disabled, and had a husband who had stage 4 pancreatic cancer. She wanted to capture their family as it was, right at that moment, and I am so glad we did.
Judy tells me that Ethan loves to swim, and even had his first trip to the beach recently. He also loves music, dancing, playing with a ball, and bubbles. They can’t go out very much but when they do, these are some of their favorite things to do.
Ethan has what is called Mowat-Wilson (a disorder named after the two doctors that discovered it). “This is an anomaly”, says Judy, “with only 500 cases found in the world.” It is a cognitive disability. Ethan is a 19 year old man with the mental ability of a 2 year old. He can not speak, he has seizures regularly, his body can not regulate temperature (so they need to be careful when he gets too hot or too cold), and his body doesn’t have pain sensors. “He needs to stay out of the kitchen when I’m cooking!”, says Judy.
We had this family’s session in July, and in early August, Judy lost her partner in life, the man who took almost full care of Ethan until he got sick, her husband Doug. She and I had a lot of tears today talking about him and her family’s loss. “We were married 42 years and I had known him since I was 16..so…my whole life.” she explained.
Judy is now the full time caregiver to her grandson, and she does it all by herself. She is an amazing woman who is stronger than you can imagine. “Ethan”, she says, “is a sweetheart, but I need a nap to gear up for my afternoon and evening with him, feeding him, following him around to be sure he’s safe, and putting him to bed.” And all of this just after the loss she has endured. It is unimaginable to me, but Judy says that she is blessed because there are so many other children worse off than Ethan. Her positive attitude is contagious.
As I tried to get the last question in our interview out, I couldn’t event ask it. I had to show her the question on my screen because I was too choked up. But, the question was…what does it mean to you to have these photos now?
Judy said “These are the last real photos we have of our family, and it means a lot to have them.” She said that the girls were asking and asking when we would get to see the photos, and they will be so excited to have them. She also mentioned that Ethan loves to see himself in photos ,and he’ll even be excited too!
You can be sure of one thing, Ethan and the girls are so lucky to have her in their lives. She is an angel here on earth, and now, they all have an angel looking over them every day.
I want to thank my sponsor for this session, Margie Booth of At Home Designs in Hockessin. She hired me to photograph her family as well as her business and I am so grateful for her order. Because of her, this family will own five heirloom portraits that they can pass on for generations. Thank you so much Margie!
If you would love to sponsor a family through my Portraits with a Purpose program, just by placing a qualifying order, contact me soon. This program makes my job worth doing every day. I love making special memories for families who deserve it.
Ana Yevonishon 302-300-7569 email@example.com