One in a Million

Two years ago, I nursed a one-year old Lizzy to sleep on the couch next to me while my then-husband and I watched a new sci-fi movie called Arrival. The movie flips conventional alien films on their head by portraying that aliens arrive peacefully in order to give a tool–not a weapon–to humanity because, in some future million years, their race will need humanity’s help in return. The tool that they impart is the ability to grasp time as circular and therefore be able to see what will happen in the future.

This movie impacted me deeply, not because of its unusual twist, but rather because of how seamlessly the plot-line of the main character interwove with the overall premise. Amy Adams plays a philologist who is the first one to learn the language of the aliens and thereby to receive the gift of prophetic sight. Throughout the movie, she sees flashes of her daughter–a daughter that is not yet conceived–and who eventually dies of leukemia as a teenager.

Her choice held a profound beauty for me because, although she was fully aware that if she conceived this child, her child would eventually die a slow and painful death from childhood cancer, she still chooses to have those 17 years with her daughter than to not have them at all and therefore avoid the associated pain.

One year ago, on April 4, 2019, I sat in a wheelchair in a private waiting room with my father while Lizzy lay brain-dead on life support. I could feel Cecilia moving inside of me, and I asked my father (a big movie fan) if he remembered the movie Arrival. He did and said it had been flashing through his head as well. I told him that even at that moment, even with the horrific prospect of lying down next to Lizzy while they turned off life support still in front of me–I would never choose to have not known her. Even if I had to suffer the pain of her loss for the rest of my life, the two years that I had with her were infinitely worth all of that pain and far, far more.

My feelings on this have not changed.

I bring it up because I just got off the phone with the NIH scientists who were doing the genetic testing on Cecilia to try and discover the cause of her blindness. It turns out that Cecilia has an incredibly rare genetic disorder known as Senior Løken syndrome, which causes not only blindness but severe kidney and renal failure.

The good news is that the kidney disease often does not manifest until late childhood/adolescence and that she will be constantly monitored by a pediatric nephrologist moving forward to be able to schedule a transplant when kidney failure sets in. There is, however, currently no treatment for the Leber congenital amaurosis that she has, which will, over time, result in total blindness.

According to the National Organization for Rare Disorders, the worldwide rate of Senior Løken syndrome is one in a million.

I will admit that it was hard not to think about Lizzy’s perfect eyesight and kidney function throughout this conversation. It’s even harder to admit that while Lizzy lay dying in Children’s Hospital, I could not help thinking that if I had to lose one of my two daughters–at that time, it would have been easier to lose Cecilia because I did not yet know an eight-month-old fetus in the womb in the same way that I knew my toddler.

Today, Cecilia is not yet 11 months old, and I can no longer fathom feeling or thinking such things. This isn’t to say that I don’t cognitively grasp how much easier it was to raise Lizzy than it is to raise Cecilia, or that I can’t do enough math to measure how much time and money is going to be spent on all the doctors and therapists for Cecilia that Lizzy never needed. If you wanted a quantitative breakdown of what each child would cost me, mentally, emotionally, financially, and psychologically, I could give it to you.

But to what end? Lizzy was physically perfect until the last week of her life. Cecilia is far from physically perfect but she is still alive. Ultimately, there is no logic or sense to this. No reason or order amidst the chaos. There is simply what has happened and what is happening. A year ago, there was no trading Cecilia’s life for Lizzy’s life. Today, there is no trading Lizzy’s health for Cecilia’s health. No such thing is possible, and I no longer allow myself to play these mental games. I would rather spend the time researching which foods are best for kidney function.

So if you want a mental snapshot of me two hours after being told that my second, still-living daughter may spend her young life going blind, in and out of doctor’s offices, on dialysis, or possibly rejecting the kidney transplant she will eventually need–this is it: I don’t care how hard this is. I don’t care what it will take. As long as Cecilia is alive, she is infinitely worth all of the time and money and energy it will take to keep her alive and to preserve her quality of life as best as I can.

And even if I knew that I would only have Cecilia for 13 years–or 17 years, or 25 years–before losing her to a failed kidney transplant, I will tell you right now that yes–a thousand times yes–I would still choose to have known her than to have never known her.

And that there is more than one way in which Cece will show the world that she is one in a million.