On Friday, August 30, 2013, I received a phone call that would forever change my life and the lives of my beloved wife, Glenda, and daughter, Katherine Belle. Medical terminology and nuance aside for the moment (medical terminology and nuance will fill future posts), the call was to tell us this: your daughter is going to die. This was not in some philosophical sense that “we are all going to die,” or a homily that “no one is promised tomorrow.” It came with a medical explanation of how she was currently dying, and the only promise was that tomorrow — or tomorrow’s tomorrow — would never come for Katherine.
In a future post, I will tell you what it was like to take that call, then have to tell your wife that her whole world is ending, while she cradled Katherine in her arms, still reeling from the anesthesia they administered earlier in the day for the MRI and MRS that led to this horrible news; my wife will tell you her emotions and memories, including what it is like to hear that news from me. For now, I merely want to introduce you to the journey we are on and the one we will take you on, should you choose to accompany us.
Memory being what it is, I have no doubt compressed three phone calls into one, and have misunderstood certain things and missed others, but I am smart enough and have done enough research to understand the implications of what I was told. A team of physicians, including neurologists, metabolic specialists and radiologists, reviewed Katherine’s MRI and MRS results and concluded that there was over a 90% certainty that she had a very rare condition known as Infantile Neuroaxonal Dystrophy or “INAD.” This disorder is so rare that we had a better chance of hitting the Powerball than having a child with it. Yet, the doctors were telling us we had hit the reverse lottery, where instead of giving you a check for millions of dollars, you lose your only child.
The remaining options were almost as bad, but might give us a year or two more with our child (the outer limit was expected to be about eight more years). All were progressive and in time would rob Katherine of the ability to move, speak or swallow, maybe of her ability to see as well, all while leaving her higher mental functioning normal until the last stages of life, literally trapping her inside a body that she could not control.
One of the themes of this blog is “Hope.” I ended this first call with a question I have repeated many times since, “Doctor, is there any hope?” After an awkward pause, he responded “You have a beautiful daughter, you need to spend as much time with her as you can.” The ending “before she dies” was not stated, but lingered as a necessary implication in the silence that followed. This advice is true and something we should all heed, but to me, the answer was “no, there is no hope.”
But this is not a blog about hopelessness. Far from it. It is a blog about hope. It is about faith. Above all, it is about love. While we have faced many hard days in the wake of this news — and will face more in the days to come — we have also felt and seen the redeeming power of hope, have been buoyed by the love given us by family, friends and complete strangers and have been astounded by the ability of faith to change things for the better, whether it is faith in a benevolent God, faith in each other or faith in a miraculous child.
In the months that followed (and as we also will detail in posts to come), we had to press for a DNA test designed to diagnose INAD (or at least 90% of the time). We had to fight (successfully) the insurance company for coverage of this test, after they told us it was not “medically necessary” because our child was going to die and there was nothing we could do about it, so there was no need to know if it was INAD or one of the other disorders making up the original list of horrible possibilities that was killing her. We received the insurance company’s “peer-to-peer” notes indicating that our neurologist (now former neurologist) made this battle more difficult by telling the insurance company that he ordered the INAD test only to get us to “accept their diagnosis and have closure.” Below is a picture of the documents appealing from the initial denial of insurance coverage. It is about as long as a novel, and far more important to me than any novel I have read, much less anything I have written.
And then HOPE. The INAD test came back negative. Their certainty was misplaced. With it fell the certainty that the remaining potential causes of her problems — a malformed cerebellum and a profound lack of balance causing her to be unable to walk despite being able to use all of her limbs — were necessarily fatal. We now have HOPE that Katherine has as many tomorrows as any other two-and-a-half-year-old, we have FAITH that she will overcome all obstacles, and we have LOVE. No matter what those tomorrows bring, we will always have LOVE.
My wife is a strong woman, but my daughter is stronger still. She is the happiest, funniest, and sweetest person I have ever met. If you follow us, you will meet her. She is not regressing, but thriving. No matter how many times she falls, rather than crying, she laughs and continues on with what she was doing. It truly is not how many times you get knocked down, but how many times you get back up.
Katherine, our beloved Katherine, keeps getting up.