Moms of kids with PCDH19 are often fierce advocates, medical managers and public educators. First and foremost though, we are moms. We celebrate our children’s victories and mourn their heartaches. We cuddle our kids in the middle of the night and kiss boo boos. In honor of Mother’s Day, we asked some of our PCDH19 moms to share their favorite memories with their children. Their stories are below.
Julie said this photo captures one of her most treasured memories with Violet. Hiking was a huge part of their lives before epilepsy and behavioral issues complicated that. Julie said this was the last hike she took Violet on without fear of her seizing and falling or melting down or overheating.
“If I knew this would be one of the last times she would experience our beautiful world not under the influence of heavy medications that dull her senses and slow her cognition, I would have gone until the sun went down and gone along more slowly and intentionally.” – Julie
Julie and Violet
Helen sent this photo from a hospital room where Bella is currently fighting for her life. She said her favorite memory is when Bella first attempted to imitate peekaboo. Bella has severe delays and was just shy of 8 years old so it was a big achievement that filled her mama’s heart with pride.
Helen and Bella
Jennifer shared that she cherishes the memories of Jane’s first words. When Jane was a baby, she was always talking and learning new words. By the time she was 9 months old, she had quite an expansive vocabulary that she lost to seizures. Jennifer yearns to hear her little voice again someday.
Jennifer and her beauty, Jane
Hillari said her favorite memories with her daughter, Olivia, are of the day to day moments.
“Someone shouts Boo and the chickens go EEK! Whether we are reading books, running or playing basketball, this girl teaches me everyday to relax silly chicken! Love you Ya-ya!”
Hilary and Olivia
Yovy is 6-year-old Alejandra’s mom. She said her favorite memory comes from last Christmas. Her daughter was in the hospital but looked up and said, “it’s ok Mommie. I am ok.”
Yovy and her daughter, Alejandra
April shared this photo of Mother’s Day 2014, shortly before Maegan was diagnosed with PCDH19. Nicole, Maegan’s older sister, bought a cake from her school, picked out all the decorations, and brought the cake to the hospital to decorate with her sister. April said she was touched by how excited and proud to present her with the cake and it was it was yummy too.
April and her girls, Nicole and Maegan
My favorite memories with Alyssa are the times that she is fearless and I see her fully embrace life in a way that is difficult for me. I smile when I think about her screaming “faster!” while she clings to me on my four-wheeler or of her laughing wildly as she chased the seagulls on the pier in San Francisco last summer.
Le and Alyssa at Kindergarten graduation
We would like to wish a very happy Mother’s Day to all of the PCDH19 moms. We hope your day is seizure free and you are able to enjoy your beautiful babies.
Le is a counselor, a professor and a mom to three kiddos. Her daughter, Alyssa, is 7 years old and was diagnosed with PCDH19 Epilepsy in 2013. She shares her journey on Mom* and would love to connect with you on Facebook or Instagram