From an NF Mom

This is my story as a mom of a child with Neurofibromatosis. To other moms of NFers: You're not alone. 

Neurofibromatosis. Pretty intimidating word when you first hear it. Even scarier when you hear it in connection to your child. If a word is this big and complicated, the disorder attached to it has to be bad. I don't think it helped that the pediatrician who first suspected it told us not to google anything about it. Like we were going to listen to that. This along with a million other thoughts raced around my head simultaneously when the neurologist confirmed she believed my 10 month old son had it. We wouldn't have an official diagnosis until we visited the geneticist at the Le Bonheurs Children's Hospital in Memphis. 

Nolan is our second born. This meant that my husband and I were so much more laid back now that we thought we had this parenting thing down. We freaked out less about the various color poops he had. We didn't rush to the doctor over every minor malady. I was actually giving advice to other moms because of my experiences. We had this down. Then this really big word crept into our life. Forget crept, it slapped us in the face like a fish (cue Monty Python fish slapping skit). The more I researched and learned about Neurofibromatosis, the more palpable my anxiety became. I was already someone who had a tendency to overthink every outcome to any major decision. But the more I learned about NF, the more I realized the possibilities for my child's future could take any number of forms from learning disabilities, blindness, tumors, bone curvature, etc. The list felt like it never ended and I envisioned a tree with with thousands of branches reaching out, any one of which my son could go down. He could have any number of these symptoms...or none. I was even worrying about his decision to have children in the future knowing this was a genetic disorder.

It all overwhelmed me and May 2016 I had a mental and physical breakdown. I was diagnosed with general anxiety disorder coupled with a seizure condition I already knew I had called psychogenic non-eplileptic seizure disorder which brought on stress-induced seizures. Lovely, right? Here I was, the mom who wanted to protect her child from every harm in this world and I was having a seizure every other day, not able to protect even myself. I had hit a pretty low place. I had to come to the realization that my child's future was out of my control. My body was telling me to let this need for control go. God was telling me this too. It was in his hands. He can hold me and my child. He's got this. I obviously didn't. I couldn't take on the stress and burden of all of it.

With an effort the size of the Louisiana purchase, family and friends literally surrounded me and took care of my family as I found a way to take care of myself. My little fighter was going to need his mama with all the things we were going to face together. And a broken down, anxiety ridden one wasn't being of much help. May became my "take care of myself for once” Bootcamp. I saw a counselor. Learned how anti-depressants can be used as one of many tools. I look at it like I was wading in water up to my nose. Anti-depressants allowed my feet to touch the ground finally. I learned to make room for exercise and journaling in my life. And also found photography as therapy. Yep, photography came into my life full force during this time. It was my meditative time. My husband, Ben, would watch the boys and I would head out to watch the sunrise over the cotton fields here in the amazing Mississippi Delta and photograph it all.

Slowly, I felt less insane. I felt like life could be managed again. I had to still check in with myself every day. Every day I had to make a choice on how I was going to handle situations and those ever present anxious thoughts. But I was making it. And one of my checks was to look at my son, Nolan, see him smile and know I had a healthy and happy child at this exact moment. During that time, those were the best moments. I had to literally tell myself to stop and look at him. I would take a deep breath and say, "He's happy. He's smiling. Today he is good and I am good." 

Fast forward to today and one of my fears has become reality. Nolan was diagnosed with is first plexiform neurofibroma tumor. Through a very attentive doctor we discovered this plexiform neurofibroma was entwined with the blood vessels along the liver. These words “plexiform” and “neurofibroma” felt like celebrity names that I knew about and heard about but doubted they were in reach or would affect my life intimately…always a possibility I suppose but probably not. It’s a hard pill to swallow and felt surreal for a long time to have this diagnosis. Our incredible geneticst called me the same day the PN was discovered just to check and see how I was doing, she knew I was worrier. She was nothing but comforting and optimistic about my son’s future. Yes, this is a now confirmed tree branch we’re heading down with it’s own series of care and protocol including a more detailed MRI and more thorough monitoring of the PN. But treatment for this kind of tumor is already advanced thanks to the FDA’s approval of new drugs to treat NF1. The efforts of countless doctors and researchers and NF parents that I am so grateful for. So much to be hopeful about and thankful for. And you know what, I can still look at Nolan and he can still smile back so I’m learning out new definition of “good.”

Every May is NF Awareness month and I end up reliving our NF journey. The reminders of May being NF awareness fill my social media pages. Every visit to one of Nolan's 3 specialists reminds me he has this condition. All the new words I’m learning that now pertain to my son and his tumor, like “MEK Inhibitor” and “plexiform neurofibroma” do affect me. Every bump I find on my child has me wondering if it's another tumor or complication. But this little cuteness of a kid, my sweet Nolan, has so many people behind him. He's got our entire family, all our friends, the amazing supportive NF community and God behind him. It's in His hands. We are so thankful for the Louisiana Purchase sized support we have. Every day. I will always be faced with these thoughts but now the choice comes easier and easier to stop and take a moment to look at my child and tell myself "He's happy. He's smiling. Today he is good and I am good." Even if our definition of “good” has changed a bit.

For any other NF parents who may be new to this. Take a deep breath, look at your child and see their smile. That's your way to keep grounded when everything feels like it's spiraling. NF does not define your child. They are still that beautiful and brilliant child you’ve always seen them as. Know that smile is genuine and that you both are good. You don't need to take on every fight all at once. You don't need to jump into every NF awareness campaign right away. There will be a day you are ready. Heck, I've started this essay dozens of times but get too overwhelmed to finish. And that's ok. Be ok with where you are at in the process of this diagnosis. Grieve. Cry. Hug your child a little longer. I’ve had all the emotions and am giving you permission as well. I’m here for you as well as an entire NF community of moms and dads and supporters. You are not alone.

All the love,

A fellow NF mom