Updated: Aug 5, 2019
Fine art kids photography is one of my favorite things to create because it's a story that the kids help to write, and one that can change over time. I offer kids photography in Maine, where my photography studio is, but I also travel to Ohio and Florida and offer kids and family photography there as well! Every year I go back to Cincinnati to visit my family and I offer fine art photography benefitting Cincinnati Children's Hospital. My sister has basically lived there because she has a pretty serious undiagnosed disease. I like to offer sessions that provide extra, free art pieces for families who donate to the hospital on their own. I do it this way because it really puts the responsibility on the family to make that decision, to chose the amount, and to follow through with their giving.
Thanks to a Facebook advertisement, I met this family of three daughters - one with an undiagnosed disease. I am one of three sisters, and my older sister Lindsey (I'm the middle) had brain surgery at three days old, was once in a double leg cast because her hip joint disintegrated at age 10, had a hip replacement at age 25 causing her to need a wheelchair most of the time now, is almost legally blind, has stroke-like seizures, ate her twin in the womb (it's actually called a teratoma, but it's a joke in our family), and has a million other issues.
People say I was born an adult, but I wasn't. On my first day of kindergarten, my only purpose was to confront my sister's bully and make him stop because the adults just weren't cutting it. I did, (he never picked on her again) and that moment has defined my life ever since.
When I was a kid, there weren't any support programs for siblings. If you've ever wondered why I am assertive, "rough around the edges," shamelessly outspoken, and don't give people in public the benefit of the doubt, it's because I've lived my life with a disabled sister who is always getting cut in front of, taken advantage of, walked on, made fun of, and ignored by the general population. When someone you love is constantly being treated like garbage, that whole "it'll be fine, just deal with it" mentality doesn't fly, because it literally is not fine and she shouldn't have to deal with it.
I didn't know to give my parents the credit they deserved for parenting three girls, one of whom was in and out of serious surgeries all the time, who needed other intellectual and physical therapies all throughout childhood. When I finally became a parent myself, though, I finally understood the pain and fear they've always lived with. I bet they felt really alone, too. Alone because other families are uncomfortable being friends with a family with a disabled child.
When I met Yasmeen, Soraya, and Leena, all of these thoughts, feelings, and realizations came flooding back. I hadn't ever looked back on my life from the perspective of an outsider. Now, I was. They're a family of three girls, Soraya is very much in a situation like my sister, and Yasmeen is very much in a situation like me. I was shocked, because I saw incredible patience, love, understanding, teamwork, and all of the wonderful things that makes a family work, no matter the challenges they face. I didn't realize how fearful siblings of an undiagnosed child are, and the weight of responsibility they carry. I didn't realize how resilient the parents have to be, and the complicated realizations they have to live with and explain.
There was this one sweet moment when Soraya's dad had to pop up the front wheel of her stroller to get it on the sidewalk and she flinched. I laughed because I used to (still, let's be honest) will surprise my sister with a little wheely and she does the same thing then yells at me 😂🤣🤷🏼♀️
The beautiful thing is - the thing that most other families don't take the time to notice - is that families with disabled or ill children won't ruin normal childhood events like swimming or theme parks or sports, and they aren't difficult to be friends with because of the disability, and they aren't any less important of wonderful than families with all able-bodies children. Instead, they are full of the kind of mindful, palpable joy that means living in the moment for every moment and appreciating them to their fullest. If your kid has a classmate who is disabled and you've never reached out to that family for a play date because of fear or discomfort, be a bigger person and get in touch. I guarantee you will learn more from that family than you've ever expected and it will be all wonderful things. If your kid is uncomfortable, talk to them, educate them, support them. Help them be the kind of classmate and friend my sister never had.
Now, Cincinnati Children's Hospital is a lifeline for children dealing with undiagnosed illnesses and for the parents. However, it's also vital for siblings. I didn't have any sibling resources in the 90's and 2000's, and I still struggle with guilt and the feeling that it should've been me, and unrealistic sense of responsibility for making my own sister's life as full as possible. Starting in my teen years, I would intentionally not perform my best in sports because I feared that any accomplishment would negatively impact my sister. I dropped out of college with a full scholarship because I couldn't deal with the guilt, and then I joined the Coast Guard, because you don't have to be exceptional to be in the military. Of course, my sister is my biggest cheerleader, but she also hurts, and I can't deal with causing that.
Thankfully, Cincinnati Children's has been doing wonderful things to expand support for siblings, giving them ways to talk about their fears, to work through their guilt with others in similar situations, and to look forward to positive ways they can interact with the world given their unique life story. Here is an article that Yasmeen wrote about her sister that was published in a Cincinnati Children's publication!
I understand that most of you who are reading this are not in Cincinnati or even in the Midwest, but if you're looking for a wonderful place to give, consider this hospital. If you feel inclined to give but want to do so locally, then search your local hospital and get to it. There are kids out there who need treatment, parents who need a friend, and siblings who need full programs to help them work through their grief.
While you're here, check out their fun Reverie Sessions below! These girls all knew exactly what they wanted, from their hair styles to the mood to the animals they wanted to hang out with. It is a true joy to be able to make dreams come true for whoever I possibly can, but especially for those who I know could use an escape from an otherwise very adult level childhood.
Soraya was all about an Arabian princess and she showed up knowing exactly what she wanted to do on her magic carpet! Perfectly teal outfit and a sassy little hip shake later and Soraya looks like royalty in her magical world. Great work, Soraya!
Leena fell in love with another Reverie image I had create for another little girl named Lake, so it was important that I created nearly the same image for Leena and that's exactly what I did! Leena was easy to work with and took direction better than most adults I've worked with - awesome job! Her dolphin friend is named Ayla and they seem to be enjoying their daily fun in their underwater world. They're joined by a couple extra seagulls in the distance, maybe they're friends, too?