6th Edition - EMMA HOPE NEWSLETTER
A number of months ago, a young man came into my shop. I don’t remember his name or what he looked like, and I don’t remember if he was a customer or the friend of a customer, but I do remember perfectly the tattoo he had on his forearm. For me, more often than not, tattoos are easily forgettable. For some reason, too many people are in the habit of etching permanent representations on their skin of designs, words, characters, or pictures that have little or no meaning for themselves, never mind anyone else that might see them. Too few have managed to use their body as a canvas that allows an artist to show the world something truly meaningful, something beautiful, something worthy of such permanence. Along this man’s forearm, in fancy, all-capital letters, were the words “HOPE IS FAITHLESS.”
At first, I took offense to this. My precious daughter’s name is “Hope,” and it was not as if we chose the name on a whim. It was easily the most meaningful word I knew. While the man was in the shop, I found myself staring at the tattoo a number of times. Part of me wanted to say something to him, but I was never able to figure out how to start. I wanted to tell him that he was part of the few that had actually managed to etch his skin with something meaningful, something that had an effect on someone else, but I found no way to tell him this without mentioning how it actually bothered me because it was my daughter’s name. I just wanted to discuss it with someone. Before I figured out how, the man departed, and I was left with the memory of those words and the question of their meaning.
We added the name “Hope” to “Emma” around the time we decided to keep her. We had recently been told that there was a thirty percent chance that she wasn’t going to make it into this world, and we figured that we needed all of the “hope” that we could muster. The hope paid off, and Emma came into our world at last. Of course, she came into our world with a bang that has yet to quiet. Brain surgery, countless MRI’s and CT scans, seizures, ambulance rides - the roller coaster ride that is the life of Emma Hope has carried so many of us on a course that just never stays flat for any length of time. The highs created by a simple giggle or the repetition of a new word are higher than most other parents can imagine, yet the lows seem bottomless and dark, with no visible way upwards at the end. And they just don’t stop.
A short while ago, in our search to determine what was keeping Emma’s legs from strengthening, Emma was diagnosed with Spinal Muscular Atrophy, a form of Muscular Dystrophy. A person with SMA has a particular gene missing or damaged and is unable to produce a protein that protects the motor neurons that send signals to muscles. Without this protein, some motor neurons die off and the person is unable to move certain muscles. Depending on the severity, a person is classified as having SMA type I, II, or III. SMA is the leading genetic killer of children, and 50% of those diagnosed with SMA type I before the age of two never reach the age of two. A person with type III usually learns to walk and then encounters difficulty. Emma’s initial diagnosis is somewhere between type II and type III. She never managed to walk, but she does not show many of the symptoms of a type II, like neck weakness and difficulty with eating. There is no cure nor is there an effective treatment for SMA. The symptoms of all types of SMA worsen with time, as more muscles are affected.
And that’s it. The roller coaster has plummeted into a dark abyss well below the surface of the ground. I get a brief flash of light every once in a while to illuminate the darkness; and something momentous, like Emma getting crowned at her very first beauty pageant, is just a temporary break above ground and into the daylight. Again, I have been told that there is a thirty percent chance that my daughter will not make it to a particular milestone in her life. This time, it’s the age of twenty-five.
I learned a long time ago what my worst fear is. As soon as I realized that I had formed a significant emotional attachment, that fear became evident. I thought of a loved-one suffering, and of me being powerless to stop it. I was terrified. When others are asked what they fear most, many say snakes, spiders, heights, fire, or something else conveniently described in one or two words. Unless one suffers from a true neurosis, those answers are suspect. Those people simply haven’t given such an important question the consideration it deserves. I’ve been on fire, I am a little afraid of heights, I’ve held snakes, and I once touched a black widow. But now my baby daughter is going to suffer, and I would gladly light myself on fire if it would help her. My worst fear is coming true before my eyes. Worst of all, it’s going to happen in slow motion. Spread out over years and years. And there is nothing I can do to stop it.
What am I supposed to do?
As I sit here, trying to come up with the next line, I slowly realize why I am having so much trouble in doing so. My mind is racing with a dozen different concepts and I don’t know which to transfer to the keyboard. All of them can be summed up with one word. Frustration. Frustration at the president and the religious zealots that run the country for putting ridiculous constraints on research that might save my daughter’s life. Frustration at the media for giving the attention to other diseases and therefore the funding. Frustration at not knowing what to say when people ask me how my daughter is. Frustration at whatever or whomever allowed this to happen. Why put a little girl through this? If she wasn’t the target, am I? Is my wife? Are we being tested? Were the three miscarriages, the brain surgery, and the seizures not enough? If He is out there, is He so foolish to think that the negligible amount of faith that I have left is going to survive an all-out onslaught such as this?
Will I lose hope? Never. Even without the outpouring of support and information that my wife and I have received recently, the thought of giving up would never have entered my mind. Before Emma was born, we were told that she would have to live with the shunt the rest of her life, unless medical science made a dramatic leap forward. Less than two years later, we were told by her neurosurgeon that Emma is a candidate for a new surgery that would eliminate the shunt if it were ever damaged or it malfunctioned. Many are saying that successful treatments for SMA are only a few years away. Assuming that proves to be overly optimistic, it is still hard to believe that medical science is not on the brink of a number of significant advances. I truly am confident that science will discover a cure or at least a suitable treatment for people with SMA before it’s too late for Emma. That alone is what keeps the hope alive.
Of course, that does nothing to improve the path of this roller coaster until then; it only lets one know that it eventually ends above ground somewhere. Soon, my baby daughter is going to look up at me, tears in her eyes, and she is going to ask me “how come I can’t walk and run like the other kids?” and the track is going to plunge ever so deep into the darkness. Not only am I sure that the words on the young man’s tattoo will ring true by then, but that the phrase will be even more truthful if one reverses the words.