When I was a child one of the things I loved the most in the world was going to work with my father. It was by no means a glorious place; it was loud and dusty, but it meant that I got to spend the whole day with my dad. He was a custom cabinet maker, so most of my tasks included sorting nails, cleaning out the underbelly of the huge table saw, (I was the only one who fit inside and could scoop out the sawdust) and holding cabinets while my dad sanded them.
One particularly memorable day, I was holding a cabinet watching my father move the large belt sander with ease up and down the side of what was to be a high end desk drawer. He was obviously very focused on his work and didn’t notice until it was too late that my right hand was directly in the path of his sander. I let out a screech and pulled my hand back to assess the damage; immediately I could see 3 round raw patches where the skin was now missing, and hundreds of various size splinters sticking out all over the top of my hand. Little droplets of blood began to fall onto the concrete floor as my dad dropped his tool and dragged me into the office in one swift motion. I could see the worried look on his face as he frantically searched for medical supplies while apologizing over and over again.
When I look at the scars on the back of my hand, I will forever remember that day; the marks on my skin tell a story that I would never want to forget, even though it was painful. Sometimes when I’m feeling especially nostalgic, I’ll run my finger over the wrinkles of that scar and reminisce about what that day meant to me. The pain never comes to mind, but I clearly remember how my father cared for me, the look of concern on his face, the feeling that everything was okay when my mom came through the door and bandaged the wound. I remember the old black phone sitting on the metal desk as he rummaged around for a bandage, and now as I’m thinking about it, I can completely visualize his dusty phone book and the shape of his handwriting on the pages; things I would never recall had I not been prompted by those 3 little scars.
Summers are always especially difficult for me because it holds two very significant dates in it. The day Naomi was born and the day that she died. As July approaches and the weather turns hot and humid I can feel the grief enveloping me more and more with every passing day. I brace myself for the long hard weeks of having the smells and sounds and tastes of summer bring all the memories of Naomi’s last days back to the front of my mind.
I have decided again and again that I don’t want to live my life consumed by grief but it is just so easy to focus on what I am missing that it takes an active everyday “will-breaking” choice to remember the good times with her and not the sadness that she left too soon.
This summer Leon and I attended the National Niemann-Pick Disease foundation conference for the first time since Naomi died. We knew it was going to be difficult to be back there without her, but we so wanted to be with the other families who we felt connected to. At one point during the weekend I was sitting with a group of young girls whose siblings were fighting the disease and I happened to mention that I had just gotten a tattoo the week earlier. One girl spoke up and said that she too was getting a tattoo in the next few weeks: “what do you think you’re going to get?” I asked her. “The word Persevere,” she responded confidently. “Me too” another one of the girls added. A third said that she too was planning to get a tattoo and it also would be the word “persevere”. I looked around the room and noticed that all over the room were shirts and hoodies, brochures and banners with the 9 bold letters urging: “ don’t give up, be determined, persist, pursue, stick to it, endure, press on!”
To me, Naomi was the face of Perseverance. So much so that when she began her fight against NPD I had wrist bands, shirts, sweatshirts, hats, water bottles, shopping bags and stuffed animals made with the word embroidered on it. Naomi and I began to sell them in an effort to fundraise, and so many people related to the word that it began to spread. Not just through the Niemann-Pick community, but to any person who was going through a difficult time in their life. People began to tell me that they looked at Naomi and were impressed by her sweet spirit in the midst of her pain, and that it encouraged them to endure as well.
Throughout Naomi’s illness, my love for her propelled me to persevere. On days when I wanted to curl up in a ball and die I looked at her and knew that there was no time for that, there was only living in the moment and hoping for another day. Through every set- back and painful side effect of that terrible disease she not only persevered, but she did it while living her life to the absolute fullest that her body would allow. In the days before she died, she was suffering badly, and I asked her if she wanted to stop fighting. She could no longer speak but had learned how to communicate with us through little gestures– my question was no sooner out of mouth than she began to emphatically communicate to me that she was NOT done, and that meant I was not done either. We fought until she literally had no other choice.
Now, 4 years after she’s gone, I still hear of people being touched by Naomi’s story. I still see the T shirts, and tattoos and it makes me realize that this little girl, who didn’t even reach 10 years old, has left her permanent mark on this world, what permanent marks am I, an able bodied adult going to leave?
The tattoo that I was speaking of to that group of girls says “Amazing Grace”. It is permanently written on my arm so that I will constantly be reminded of Gods grace to me, and the grace that He would want me to extend to others.
I have many scars on my body, some have been put there by chance others by choice; each one has a story attached to it, and each story is another chapter in my book. Someday, when people read my book, I hope it leaves a mark.