Rare is Not
Rare is not predictable. My rare zebra is the youngest of three children. Since her birth, we have experienced one unpredictable blow after another, often with barely enough time to catch our breath before the next one hits. I liken it to being physically attacked, putting your hands up to protect yourself, maybe trying to find a hiding place, but no matter how hard you try to avoid the blows, it never works. You do literally everything possible to control when those blows may come, how much impact they will have, or whether they even come at all, to no avail.
I think parents of typical children would agree that there is a degree of predictability in the phases they go through. We all know about the terrible twos that are actually the terrible threes. We are warned by others about teenage moods and the struggles we will likely face. We are prepared to help our young adults begin to navigate adult responsibilities and life. We may face the stressful moments of a broken arm or leg, our child requiring a tonsillectomy or appendectomy, braces, or maybe one of them needing tubes in their ears. We know they will tell us when something is bothering them, and we know we can take them to the doctor or hospital where it will be fixed. And one day, we will send them off to begin their own life.
Not so with rare. The first blow for me came when my sugar and spice and everything nice bundle of pink was not born healthy as I believed she would be. After days of denial and weeks of numbness, I convinced myself I could do it, it would be okay. There were seizures and a sleep disorder. Then came UTI’s and a vesicoureteral reflux diagnosis, then there was hospitalization after hospitalization for dehydration and I watched my girl slowly fade away. I heard words like neurodegenerative and progressive. I thought about funeral arrangements, and we moved forward with g-tube placement. And suddenly, there was a new diagnosis: bowel malrotation, and following corrective surgery, I had my girl back. It was okay, we could do this.
Development was either slow or non-existent. She rolled at a year old, sat at four, never walked, and never talked. But she was happy, so we could do it. And we did. Along the way, my girl was given a rare diagnosis. Now that we knew who the bad guy was, surely things would be easier, surely the blows would lessen or at least be more predictable. That wasn’t the case, however, because rare is not predictable. There were scary seizure moments, many of them, and hip subluxation requiring surgery with a long and painful recovery. There was a near-sepsis hospitalization, a scary run-in with RSV and pneumonia, multiple GI surgeries and crisis. There was drug-induced neutropenia and tachycardia.
As if the incoming blows not being predictable wasn’t bad enough, finding the right help when they hit becomes more and more impossible the older she gets. Unlike my typical children, she cannot pinpoint what is hurting. There are no clues and because rare is so unpredictable, that unpredictability seeps into medical care, as well. Tests don’t give the answers they might give for a typical child, answers don’t come easily, and the complexity of her disorder means things are missed all the time. The “we can do this” often feels like “I don’t know how much longer we can do this.”
At some point on the rare journey, you resign yourself to the fact that rare will never be predictable and there will be many scary things you will never be able to control or prevent. In a way of grabbing back some control and out of survival, you start to focus on those things you can control and predict: your child’s smile and how much joy you experience together every day. You find yourself staring at the moon and stars well past bedtime because she is mesmerized by them, and you can’t tear yourself away from the wonder you see in her eyes. You sing everywhere, in the car, in front of doctors and EEG techs, and even during shower time, because all that matters is that smile and that moment. You allow an enormous poster of Justin Bieber to sit front and center in her room and listen to his music because he too makes her happy. You spare no expense or physical energy on your part to give her a reason to smile.
My typical children will one day, predictably, move on from our home to start their own. They will fall in love, find their dream jobs, and they may become parents themselves. My rare zebra will always need me. I will forever be her voice, her legs, and her advocate. I don’t know all the things that await us, but I do know I will make sure there are many days filled with smiles. Rare may not be predictable, but my love for her always will be. And because of that, we CAN do this.
Jennifer Clatterbuck
