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.
“Everyday PCDH19 epilepsy steals away another piece of my child. She has no quality of life, no childhood.” Helen O.
Cheng said that his daughter started having seizures when she was one year old and developed global delays even though she had been developmentally on track. In the years since, he and his wife have worked hard to become Tiffany’s advocates to be sure that she receives the best education and therapies possible. They are hopeful that she will eventually read at a fifth grade level and become seizure free.
“Everyday PCDH19 is a fight for what we seemed to have taken for granted, as when tiffany has seizures she holds her breath and loses oxygen.” Cheng K.
Jennie worries about the six pills that her daughter, Tyra, has to take every day. She said they make Tyra tired and she is scared of the long term side effects of her medications. At the same time, she is afraid that the drugs will eventually stop working and the seizures will return.
“It’s kind of a deafening feeling that impacts the whole family.” – Jennie A.
Kristine’s daughter Ella has PCDH19 Epilepsy. She said that the disorder keeps the whole family on their toes.
“There is never a dull moment with Ella and her PCDH19.” – Kristine L.
Rachel said she is always vigilant about the possibility of another seizure. She said PCDH19 is always on her mind and she’s always worrying that her daughter, Emily, will have another one.
“Every pause Emily makes, every time she turns her head too far even looking out the window, every time she is not totally herself we worry if a seizure is here or coming.” – Rachel S.
Dee said her daughter struggles socially because of PCDH19 Epilepsy. Tessa wants to relate to others and care for herself but her language and motor delays get in the way. Dee’s son struggles because he wants to play with his sister but often needs to help care for her instead.
“We all just want Tessa to be happy and healthy. For every day that she is we are thankful.” – Dee D.Dee said her daughter struggles socially because of PCDH19 Epilepsy. Tessa wants to relate to others and care for herself but her language and motor delays get in the way. Dee’s son struggles because he wants to play with his sister but often needs to help care for her instead.
Leslie said she is thankful for every day her daughter, Arielle, has but she worries about when the next seizure will strike. She has to balance therapies, learning delays and educational issues while trying to keep Arielle safe. She said she’s grateful for the support of the families in the PCDH19 Alliance though because they understand her struggles and heartache.
“You could never have imagined your child to be stricken with a disorder that is so horrid it could be depicted in a movie. AND, this is just the seizure aspect.” – Leslie P.
We are so grateful to the parents who were willing to share their struggles. If your child has been diagnosed with PCDH19, or if you are interested in supporting our search for a cure, we encourage you to explore this site and reach out to the Alliance. We are here to provide support, education and hope.
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