When my daughter received her diagnosis of PCDH19, I fell apart. I had days when I couldn’t get out of bed and times when the grief seemed overwhelming. I write about this now because at the time I thought that I was alone. I looked at the special needs moms that I knew, or the ones I saw online, and I was convinced that they were all superwomen. They were out and about raising awareness or changing laws. They seemed to juggle the endless appointments with ease and never melt down about the challenges of this life. I was nothing like the people I thought they were.
Over the past two years, I have learned a few things. First of all, when I got to know the super parents, I realized that they were not quite as invincible as I imagined. I also realized that we are all at different points in this journey and we each cope with this diagnosis in our own unique ways. Some of us try to make meaning by advocating and fighting for a cure. Some families reach out to their communities while others try to keep things as normal as possible. When things get rough for me, I am more of a mama hen; I want to gather my babies under my wings and hide in a corner where I think we’ll be safe. In truth, none of those approaches are better than the others. It really comes down to what works best for you and your family.
You might still be reeling from the diagnosis, unsure of what this means for your child or your family. Maybe you have been on this road so long that you are exhausted and unsure if you can take another step. You might even be at one of the high points where you have the energy and peace to help those who are struggling. I want you to know that where ever you are, that’s OK.
One of the defining markers of PCDH19 is that our kids have seizure clusters. By nature of the disorder, we often have moments of crisis surrounded by daily life. Your child’s diagnosis is not a one-time crisis that can be handled and moved past. It is a lifelong journey for every member of your family. This road we’re on is long and winding and often treacherous. Don’t push yourself to look like another parent who is in a different place than you are. Don’t judge yourself because you are grieving, or because you are happy and you aren’t sure that is allowed. Give yourself the grace to be a flawed human that sometimes struggles and often falls but also witnesses the occasional glorious sunrise from a mountaintop that parents with smaller hills never get to see.
At this point in my journey, I have started to make peace with what is. I’m in a space where I can speak more freely with others about what I’m going through because I understand it better and have had time to grieve alone and in my inner circle. I’m not the superwoman I originally aspired to but I’m doing the best I can. I believe that we all do the best we can. My best may look different than your best but that’s ok because my journey is different than yours. Sometimes my best is sitting vigil by my daughter’s hospital bed and sometimes it is demanding change from politicians or principals. Sometimes my best is loudly advocating for her rights and sometimes it is quietly praying alone. I know that it is tempting to judge yourself in your darkest hour against what you think is my brightest one. From one frazzled parent to another, I am asking you to take a deep breath and tell yourself that it is ok to be where you are. Whether you are raising awareness globally or hanging on by a thread, that’s ok. We are on this road together.
As we move closer to November, which is Epilepsy Awareness Month, you’ll notice more calls to action from the Alliance. We’ll be asking you to reach out to your community to help raise awareness and much needed funds for research and family support. We greatly appreciate those parents who tirelessly work to raise the money to support groundbreaking research into this disorder, and we also believe that every act of advocacy matters. Whether you are raising awareness in your child’s classroom, running a lemonade stand, raising thousands of dollars, or fighting for your own child’s health, those actions are changing the world for our children. We are always excited to learn about the many unique ways that families around the globe share their story during November and we have streamlined the process of creating a personalized giving page so you can easily share it with those around you. (Click here to start your’s now.) We want you to know that no matter where you are on this journey we appreciate you and we are here to support you.
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 November of 2013. She shares her journey on Mom* and would love to connect with you on Facebook or Instagram.