What happens when a Daddy is unable to do the most basic of a Daddy’s duties? One of the most significant responsibilities a Daddy has, well any parent honestly, is protecting and caring for the well being of their child. We pride ourselves in making sure they live in a safe home, are insulated from things that may hurt them, and teach them the things that they will need to know when they set off in the world. What happens when the wolf at the door is one we cannot chase off?
When our Daughter Grace was 18 months old, she was diagnosed with Neurofibromatosis, or NF1 as it is most often called. NF1 is a genetic disorder which occurs once in every 3,000 births. This disorder can be passed down from a family member or it can occur through a spontaneous gene mutation. There is a wide spectrum of symptoms associated with this disorder, and each individual is affected differently. Early warning signs come in the form of cafe au latte spots as early as birth once there are a certain number of these spots; it is a strong indicator of the presence of NF1. On the mild end of the spectrum, symptoms may include the cafe au latte spots, and possibly neurofibromas, or small tumors on or under the skin. More extreme, and rarer symptoms, include deformation of the bones, curvature of the spine, and formation of tumors in the brain, on the spine or on the optic nerve. Studies also show that 50% of those with NF1 have some form of a learning disability.
Now, after becoming a Daddy I had thought, as I assume most Daddy’s have, of scenarios I would need to protect my Daughter from. A stranger lurking nearby, a school bully, maybe even a jealous boyfriend. What I had never considered, and now deal with every day, is an adversary that I can’t control. I can’t beat it up, I can’t intimidate it, I certainly can’t reason with it. So, I had to think long and hard to figure out a way to cope with not being able to “save” my Daughter. Trust me, when your child is facing a tough road ahead, and you can’t smooth it out, it’s a heavy load to bear. I consider myself a problem solver; I take pride in the fact that when something is out of sorts, that I can set it straight. Not being able to change or correct the situation was a bitter pill to swallow.
So, I tried to figure out what I could control. What aspect of her disorder could I attack head on? With the help of my amazing Wife, as a family we decided to make a difference where we could. We began “Gracie’s Gang”, so we could help raise the funds and awareness needed to continue research and care for those battling this disorder. In our home, we began trying to figure out how to handle Gracie’s disorder as a family. My Wife and I have two distinct personalities and handle most situations quite differently, as do most couples I suppose. My Wife was easily upset by the situation and had a difficult time in the beginning. I tried as best possible to keep a brave face , and remain as upbeat and positive about the situation as humanly possible. This could very easily be mistaken for being cold, disconnected, or even uncaring. Trust me that was far from the truth. I realized early on that I had to control my emotions; this was what was needed at the time. In my own time, in my own headspace, I allowed for my emotions to get the best of me. There were certain songs that would stir strong emotions, still do, or talking with certain people would set me off, some days I would just get myself in a mood and be unapproachable all day. It’s not always easy to keep your game face on, so to speak. It was, and remains to this day, difficult to get people to understand just what this disorder entails. People call it a disease, it’s a disorder, or ask what type of cancer it is, it’s not. All you can do is forgive the ignorance and try to educate as many people as possible.
After the anger, the fear, and the sorrow set in, I had to figure out how to best be there for Grace. What could I do to help her battle this disorder and be an energetic, curious and happy child. I realized that I could make a difference by teaching her how to not only cope, but to thrive under the circumstances. My Wife and I have taught her that she is special, that she was chosen, because she is so strong. That her disorder will never hold her back, and that she can actually help others with her disorder to live full lives. This has also given us the chance to teach her about acceptance, tolerance and compassion. We strive to teach her that while she is special, she should not expect to be treated as such. Grace will be held to the same standards as any other child. She will learn to do the same things, physically, scholastically and socially as any other child. My belief is that she has a gift, as strange as that may sound. And that Grace and we as a family are obligated to do what we can to educate as many people as possible about NF1.
As I relate this story to you, Grace is pushing 5 years old. She is a giggly, spunky, beautiful girl. Grace is equal parts Princess, entertainer & Jedi Knight. Grace loves making people laugh. Grace is tough enough to battle her twin Brother Connor, yet sensitive enough to make sure if she has ice cream, that he does as well. Basically, she is a typical 5 year old girl. Grace is just starting to become aware of some of the things that make her special. The challenge that lies ahead is in making sure that she doesn’t forget that while she is special, it’s what she does that makes her so, not what she has.
This has not been an easy road to travel, and I imagine there may still be a few obstacles laid before us. But, I am confident that as a family, we can overcome anything thrown at us. I know now, having spoken with a number of other Fathers about this very subject, that there is something to be said for calm, quiet strength. So, to all the Fathers who fight back the tears, who take long walks to let off steam, or who maybe even write to get through the day. You have my empathy, my compassion, and my respect.