So many Rare parents have heard this from a doctor after getting a diagnosis. It's usually followed by “there's nothing we can do for her” or preceded by “There's no cure and no treatment so...”. These words can feel cruel and uncaring. They come at our worst moment and seem like an added insult to injury. But if and when we're able to get past what we wanted to hear from that doctor we might be able to hear the phrase differently.
What we wanted from the doctor was a plan, some answers, next steps that would improve our child's situation. It's hard to realize that it is not the doctor's fault that there is nothing to be done for so many of these diseases. “Go home and love your child.”
We hate that phrase because it's defeatist. The doctor is abandoning us to our fate. We will find no assistance here. “Go home and love your child.”
But divorced from the context of the diagnosis-day's news, that phrase is wonderful advice. It may be cold comfort and the very least help a physician can offer, but he or she has resorted to it for a reason. That advice may not be the only thing we can do for our kids, but it's the best thing we can do.
And it is also the best advice for everyone else with kids, even if the kids are in typical health.
But when facing your child's Rare diagnosis, going home to love them is everything. You will love them for what they are and not for what they could have been. You will love them enough to fight for whatever comforts, accommodations and treatments are out there that will make you child's life the best it can be even if it isn't the longest life we could hope for. You will go home and love your child and you will get online and find resources more expert than the doctor who gave you the diagnosis. You will educate yourself and learn to love your child enough to ignore the doctor who says there's nothing we can do. You will find something to do, if not in time for your own child then for the next ones who will face this diagnosis.
You will love your child more than you knew you could. You will find joys you thought impossible. You will find hopes you were told are improbable. Some of those hopes will be dashed and new hopes will creep in to replace them. A Rare advocate named Nisa Katz introduced me to the phrase “chronic hope”. Rare patients suffer from chronic hope. Rare parents suffer from chronic hope too. That hope comes in many colors. It isn't just the bright hope for a cure, a treatment, or a fix. It can be a hope as dark as wishing for a quick pain-free death. It can be the soft hope that today will be a good day. It can be the bolder hope that the good days will out number the bad.
Maybe you'll do nothing more than enjoy your life with your child. Good. That is what you were meant to do. It's what you were meant to do before getting the diagnosis and it remains your purpose after the diagnosis. “Go home and love your child.”