My First 18 Months as a PCDH19 Dad

What is PCDH19? I remember asking this question over and over when we received the diagnosis for Louie. I always say Louie won the lottery, but not in a good way.

So if I may take you back to my introduction to all of this. I’ll never forget it as long as I live. Louie was his normal 12 month and one week self, he was playing and all of a sudden he fell back like I had never seen. I jumped up and grabbed him and he seemed to be choking (I’m now embarrassed to say that I had no Idea he was having a seizure). I yelled at my wife to call 911. Our three other kids who were getting ready for school heard the desperation and watched helplessly. The EMT’s and Police arrived within minutes and by the time they arrived Louie had snapped out of his “spell”. We explained what we had seen to the emergency crews, they checked him out and urged us to go to the hospital. As we were checking him in the ER it happened again. They immediately rushed us back to a room where they started working on him and the doctor yelled, “he’s having a seizure and his oxygen is dropping rapidly.” This one was much longer, and I could see the panic in the staff. As soon as he would get out of the seizure another would happen and then another and another. My perfect miracle boy in an instant was struggling to breathe and convulsing uncontrollably and I was helpless. Before we knew it he was being airlifted to a level 1 hospital in the city. I just remember my wife begging the team to allow her to ride with our baby boy. In the span of two hours our pretty perfect life got ripped apart. What I thought was gonna be a pretty normal Tuesday all of the sudden became what I can only explain as the worst day of my life.

So that was my introduction to seizures. It has since been about 18 months and many more seizures have happened and many days in the ER and ICU. That doesn’t define us though. We have learned so much since that first day. My wife, Christy has immersed herself into this disease and has found solace within the PCDH19 Alliance. I have accepted that this is our reality. The hardest thing for me is the not knowing, I don’t know if today is going to be the day we call 911 and take the ambulance ride with Lou to Children’s Hospital where we will count the 20+ seizures he will have in the span of 24 hours? I don’t know what Louie’s future holds. I accept this as our new reality, because honestly what are my options? We have tried our best to focus on his three other siblings, because we have recognized that they suffer too! We’re honest with them, we try to talk to them about our new reality. We’re not perfect and obviously they suffer too, but we do our best to allow them to have as normal life as they can. Vacations, family outings, games, and dinners now look different, one of us stays back with Lou while the other tries to give the other kids a resemblance of pre-seizures, but obviously it’s not normal, but it’s our new normal and we don’t know if that’s the right answer or not. This has taught me to try and appreciate every day, but it’s hard because I’m always wondering if today is the day, and I’m a little more edgy. Sometimes I take it out on my kids, or wife. I do my best not to, but I fail at times. This doesn’t define my family, but it certainly has altered the course of my family forever. They say it takes a village and I always thought that was silly, but now I truly believe in that and our village is amazing!! We wouldn’t be able to do this without our friends and family. The meals, the carpool, the shoulders to cry on and the ears to allow us to vent. I don’t know what our future holds, but I know that Lou has a village supporting him and for the rest of my days I will be there with him. I will be whatever he needs me to be, his protector, his cheerleader, his disciplinarian and oh yeah his dad! I love my boy and his momma and his amazing siblings!