By Marilyn Maloney
When my daughter was born, she was perfect. She had blue eyes like sparkling pools, dimpled cheeks, and a smile that gave her a constant look of a kid opening presents on Christmas morning.
She slowed down in development and started missing milestones around 8 months. When she was 13 months old, an MRI told us she had a Leukodystrophy, a fatal disease with no cure and no treatment. We went from a state of baby bliss to rock bottom and had to start over in a world we had not been exposed to. It was like we had previously looked through a pane of glass at the world of special needs, and now we were on the inside.
Even as my daughter grew, she did not look like she had a disease. She had bouncy curls and a happy smile. Although she did not walk or talk, she was small enough that people didn’t notice. Well, maybe they noticed, but I told myself they didn’t.
When I saw other special needs kids and adults who could not control their movements, arms in odd positions and drool sneaking from the side of their mouths, I was ashamed of my thoughts. “Maddy is different. She is beautiful and any drool is from teething. She holds a spoon and brings it to her mouth.”
As months stretched to years, she slowly began to look like she had special needs. She had a hard time holding up her head. Receiving blankets transitioned to become bibs for the drool. She lost her grasp reflex and could no longer hold the spoon. There was no denying that we were a special needs family.
Avoiding the Texas heat, we had family photos done while visiting my mom in Western New York. We asked the photographer to come to the house during that short time when neither our toddler, Jimmy, nor Maddy would need to eat.
Megan came walking down my mom’s street in a loose white top and shorts, camera hanging from her shoulder. She looked relaxed and welcoming, even while carrying a bean bag chair about half her size. We played and sat with the kids while she snapped photos and chatted. There was no formal setup. The humidity pulled Maddy’s curls up into perfect spirals as she laid on the bean bag chair in the shade.
My mom’s backyard grass was a vivid green color I don’t think exists in Texas. It was soft and cool, a background framed with Rose of Sharon and lilac bushes. Jimmy was quiet and curious, just starting to walk on shaky legs. He stared intently at the camera while holding my hands. Maddy smiled and laughed when my husband, Jim, threw her into the air.
The shoot was simple and easy and the time flew. Megan tried some gluten free coconut chocolate chip cookies my mom made and we thanked her as she said goodbye. She thanked us too, because, we quickly learned, that’s just how she is.
Over the next week or so Megan emailed me about how gorgeous my children are and told me she was interested in learning more about doing photography focused on special needs. Many special needs families don’t bother getting family photos because after the stress of getting the family ready, the photographer may not catch one smile or the slightest hint of eye contact.
Another week passed and Megan sent me the link to our photos. I logged on with a password and there she was–my Maddy. The first photo was the way I saw my daughter every day, as if the camera saw through her disease. She was a beautiful girl with the big blue eyes, bouncing curls, and a smile that makes everyone around her smile. I did not see my daughter struggling to hold her head up or drooling onto her bib while unable to stand and walk. I saw my girl looking right at the camera, smiling and laughing with her dad.
To the outside world, my daughter is the girl in the wheelchair, with children staring and friends who are so sorry she has this disease. These photos showed the girl as we see her, disease-free, holding up her head and smiling proudly, free to be Maddy, instead of Maddy who has Leukodystrophy. These were so much more than family photos.
You know how in some photos, you can tell what the photographer is feeling? In these, I could tell that Megan saw my daughter as her perfect self, Leukodystrophy and all.
Marilyn Maloney is an engineer and late-night medical journal reader. She lives with her hero of a husband, beautiful puzzle of a daughter, and her cheeky son who likes to jump off the furniture.
Photo: Megan Dempsey