Another Year in Holland: Life as a Parent of a Child with PCDH19
The decorations are put away, the ball has dropped, kids are heading back to school and parents around the world are officially starting another year in Holland. I’ve never actually been to Holland but I’ve lived there for the past four years. Holland is the country of parents of children with special needs.
In 1987, Emily Perl Kingsley wrote a poem titled Welcome to Holland that described her life as a mom to a child with special needs. She said it was like taking off on your dream trip to Italy and then being dumped in Holland instead. Eventually you learn to see the beauty where you are, but you always grieve the Italy you dreamed of. Thirty years later that poem is still one of the first resources moms and dads are given as they struggle to come to grips with their child diagnosis. We cling to it because it tells us that we’re not alone.
For parents of children with PCDH19 Epilepsy, life in Holland can feel lonely. Many of our friends and family simply don’t understand what it’s like here. There are clusters of seizures and calm times that can be devastating because they show us what has been lost. There are behavioral and cognitive challenges that leave us pining for Italy. There is also hope that the researchers working tirelessly towards a cure will find one though. There is compassion, grace and bravery we see in our kids as they rise to face their obstacles every day.
As we enter into another year year in Holland, we wanted to give you a glimpse into this country of ours. Several parents of kids with PCDH19 Epilepsy, and spoke about how this disorder impacts them, their children and their families. Their stories are below.
Jody told me that PDCH19 has impacted every facet of her daughter, Remy’s, life since she had her first seizure at 9 months old. She said she used to dream of playing dress up with her daughter or seeing her get married but now she dreams of hearing her speak or the celebration they’ll have if she ever reaches six months seizure free. Jody said she has to be constantly watch Remy to make sure she isn’t harmed by a seizure and she wonders what her daughter would be like if she wasn’t on so many medications.
“My dream now is to see Remy be able to just be a kid and not a diagnosis.” – Jody W.
Julie described the fear involved in parenting a child with PCDH19 Epilepsy. She said she worries about what Violet will be doing when the next seizures strike and if she will be harmed. Even the simple pleasures of childhood, like riding a bike or swinging, can be dangerous if she has a seizure.
“It is a constant balancing act of risk/reward.” – Julie W.
April spoke of the chaos that PCDH19 brings to her family’s life. Her daughter, Maegan, is 12 and has to balance the demands of middle school with moodswings, seizures, and the regression that each cluster can leave behind. April said she’s exhausted from juggling everything and often feels helpless but she is hopeful that a cure will be found.
“Everyday PCDH19 takes us on an unpredictable journey that can change within minutes.” April H.
Helen’s daughter, Bella, is a medically fragile child with PCDH19 Epilepsy and Autism, an unfortunately common combination. She talked about the trauma of watching her child come very close to death when she is in status epilepticus which is a seizure that the body can’t shut down and can be life threatening. Helen said she is constantly reminded that this disorder has made her 8 year old daughter be stuck developmentally at 12-18 months with little hope for improvement.