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.
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.
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.
Hillari said her favorite memories with her daughter, Olivia, are of the day to day moments.
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.”
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.
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.
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