By Jessica Jemente
A few hours ago I was fine…Well, okay, not fine but I was suppressing/managing my anxiety to the best of my ability, like I do on a normal basis. BUT last night it all hit me. This is what life is like now. It is fear, sadness, the feeling of being lost, angry, confused and helpless.
This is having a child with an incurable medical condition. Not a medical condition that entails just ONE type of illness or symptom but a terrifying genetic disorder that causes countless symptoms, illnesses, pain and disabilities and there’s no way to know when/if they will show up or how severe.
So, when my beautiful daughter complains on and off over a few weeks that her “tummy hurts” pointing to her chest or that her legs hurt or I see new bumps or spots on her skin, my heart sinks. I begin to think of worst-case scenarios and my stomach is in knots. I quickly think about which specialist I need to contact and if this is something that we should see her regular pediatrician for (because she is, after all, a growing toddler) or could it be something more growing inside her, something out of place, a tumor, the list goes on…
My husband and I talk it over and over and over. I reach out to my fellow NF parents and search MANY posts related to what I see my daughter experiencing. Then book an appointment and talk to the doctor about everything that’s been leading up to this. I rack my brain trying to remember every diagnosis, struggle, pain, treatment, medication and supplement she’s taken at EVERY appointment. It’s exhausting and I have to relive the pain this disorder is causing every time but I don’t want to miss anything that could be relevant. If I do forget to mention something I am so disappointed in myself for not memorizing every detail of her health by now or not preparing my questions better beforehand. We discuss our plan going forward and what we will do now (X-ray? MRI? Will she need anesthesia again? EEG? Blood work? See another department? Try a med?). Will it be diagnostics today or just monitor this time?
We go home and try to resume our normal day to day life. Then it happens again…Something else pops up. Mya seems to be in pain, she’s walking a little strange, she rolls her eyes, and twitches in a funny way. I ask, “Why is she tripping so much all this sudden?” The whole cycle starts again- worry, fear, research, questions, which specialist, doctor’s appointment, diagnostics, wait and watch, repeat.
All this, not to mention preparing Mya for everything that is going to happen to her. Helping her through doctor appointments, the poking, prodding, needles, wires, “pictures of her bones,” checking on her “superhero spots.” My little girl has just turned 4 years old. “Why does she have to endure more than most adults?” I ask myself. I feel overwhelmed with sadness but I have to stay strong for her.
And our daughter…Our beautiful, smart, kind, sassy, WARRIOR of a daughter! She gives me so much strength, courage and determination. She lights up everyone she meets and has so much power in that little body of hers! She is so resilient (as are so many little warriors like her) and she handles things that most adults have a hard time with.
This cycle happens over and over. Sometimes we have weeks or even months where little things don’t pop up and we don’t have to question every movement, pain, groan, strange behavior and tummy ache or eye twitch. In those times, I may go hours, maybe even a whole day without thinking about my daughter’s disorder, worrying or thinking about all of the “what ifs” happening inside of her body that I can’t see.
I smile, laugh, talk with friends, cry, have bad days and good days, share posts, interact on social media, run my business, we play, our family enjoys time together, we go shopping, cook, clean, do laundry. Everything is NORMAL, as it should be. EXCEPT IT’S NOT…. in between all of those normal moments something hits me. It could be a spot on her skin as we get ready, an appointment on the calendar, seeing her freeze up when another kid runs too close to her, watching her struggle a little on a step at the playground or even just a post I see from another NF parent. Sometimes it’s for no reason at all…
For clarity, I wrote about our “normal” day to day routine before Covid-19 happened. Now, in the time of “Safer at Home” I find myself homeschooling, doing therapy, working and trying to help Mya adjust to all this without increased anxiety and juggling this strange new way of life just like most every family in the world right now. Mya’s yearly and 6 months checkups have all been put on hold and I am left to wonder when she will get her “baseline” appointments with all her specialists again. They are stressful appointments, yes, but also reassuring to have her 
developmental and baseline health stats, and I am missing those appointments now. I am grateful that Mya just recently had her yearly MRI (which came back clear) and that she has seemed to have no medical issues since this pandemic started, but some parents and children are not so lucky. I’ve spoken with many other friends in the NF community whose diagnostics have been put on hold. Although this seems like no big deal to some, it’s a huge deal for a parent who was just about to find out why their baby girl is having seizures occasionally, why their little boy is having vision issues and headaches so much, a parent that has just been told their child has NF and are left with so many questions because their appts are now delayed. I also know how important safety is not just for patients but the doctors and staff at all hospitals as well. Things are hard for everyone right now and I have to remind myself of that.
Just the thought of having to bring Mya in to a hospital right now for any reason gives my anxiety. I think to myself, “Will a phone appointment be enough? If she has to go to the emergency room, what risk am I putting on her? Is she at greater risk of catching Covid-19 because of her NF?” I know many are currently going through the same thought process.
I am just grateful that our last few months have been good ones and I try to focus on that as much as possible. I also reach out the others around me in the NF community who are in my position as well. Our situations may be different but we can all relate in some way and being there to listen and support other NF parents gives me strength during a time when there is so much uncertainty.
I struggle every day with this anxiety.
I am learning to cope with my daughter’s diagnosis and making sure she gets the best possible care. I find myself hypersensitive to the struggles and ailments she endures and some days I am drowning in a pool of tears because I’ve lost my way. I dream every day that this picture I have just painted for you is no longer our reality. That when something happens to our little girl we will have answers, treatments that work and most of all A CURE. Spreading awareness and funding of NF research is so important to my baby, our family and so many others we’ve had the honor to build relationships with (most of them amazing young children like Mya). It could bring us closer to treating with medications (like selumetinib that was just FDA approved!), more support and one day even a world without this awful disorder.
I can’t fix everything. I can’t know everything. I’m still trying to come to terms with that and one day I will feel like I can handle it all better. One day I will be a little more at peace with the way life happens. Until then I will share, be honest and vulnerable and continue fighting for our daughter, advocating and fundraising for NF research.
