It’s hard being a kid with trigeminal neuralgia. But it’s also hard being the parent of a child with TN. Almost immediately your relationship changes to include the roles of caregiver and advocate. I think any parent who has a child with a chronic illness would never begrudge those roles, it’s just not a role we want to play. The hardest part, without question, is finding the balance between compassion and tough love. But if you want your child to survive and thrive, you have to do it. Here’s how.
First: listen. Take the initial cues from your child. Trigeminal neuralgia is a clinical diagnosis, meaning doctors will follow the verbal cues of your child. They listen to key words and phrases like “lightning strike” or “shocking pain”. Similarly, you have to learn to really listen to your child. TN is a disease that will get progressively worse and you have to be prepared for that, but you can’t let your child live in fear of living. You will learn to know your child’s limits by asking the right questions and hearing what they say. You will learn that the verbal and physical cues change when their pain levels are escalating or when medications are overwhelming them. Support them, but keep them moving forward.
Which brings me to my second point: push them. This is especially true of young people with TN. Childhood is supposed to be an idyllic, carefree time and a diagnosis of trigeminal neuralgia can quickly derail the plans you have for your child. Don’t let it, and surround yourself with people who support you in that decision. The first people you need to enlist to help are your child’s teachers and school officials. It is critical that you intercede for your child at the beginning of every new school semester. While I am usually an advocate for my daughter to speak for herself and learn to be assertive, the beginning of a new school year with new teachers and administrators is not the time to push. I always took the time to email anyone who might have cause to interact with my daughter throughout any given school day. I explained her diagnosis; I explained that she may leave their classroom without explanation; I explained the medications that she was on and their side effects; I asked them to designate another student in the class who would follow her if she left the classroom. I praised her for being strong and persevering and I offered to make myself available should they have questions or concerns. I copied my daughter on the email and then I stepped aside. I pushed her to be an advocate for herself and I pushed her to be present in the classroom and available to her teachers– but I set parameters for the expectations of others, making clear that I was awed at her ability to maintain her school obligations despite TN. We required her to participate in at least one extra-curricular activity so she was forced to maintain social relationships and we made her sit at family dinners even when she was in too much pain to eat. It’s too easy to give up, and you can’t let your child give up. Because one day when they come out of it– and they CAN be pain free– they will need the skills they developed in this critical time of development.
Lastly, love them in whatever way they need to be loved. It took me a while to figure this one out. I wanted to hold my daughter, and sooth her and tell her it was going to be okay. I wanted to continue being the mom I’d always been. But one day she lashed out. She told that it was agony for my long hair to brush against her face when I hugged her; my constant asking if she was in pain was annoying, and in fact, I did NOT know that it was going to be okay because the medications weren’t working, her MRI was clear and her pain was getting worse. I wasn’t listening and I was pushing her away. So I listened to how she needed to be loved and we pushed forward together. I held her hand instead of hugging her; I sang her favorite song to her in the middle of pains instead of asking what it was on a 1-10 scale; and I started researching on my own. I was an advocate when she wasn’t around and a caregiver when she was. Both roles let me be her mom, let me fight for my daughter, but I followed her cues to give her what she needed in each moment of her struggle.
My daughter has been pain free since March of 2014 after a successful MVD (which took a LOT of research!). I’d almost forgotten how great it was just being her mom. She’s out right now with friends, registering for her junior year of high school and discussing which Honors Chemistry teacher is better. So I am typing this, advocating for her and others like her. And when she gets home, I will put the computer away and hug her and remind myself how very lucky I am that I got to hug my daughter today….
–Stacie Warren Winslow