R.S. Hibbard

@r-s-hibbard | contributor
R.S. Hibbard shares the challenging path of parenting a child with 22q11.2 Deletion Syndrome, while managing her own invisible differences.
R.S. Hibbard

The Invisible Differences Manifesto

I’m part of a group of amazing parents and children; people bonded by diagnoses — most you’ve probably never heard of. Many disabilities, differences and illnesses are not easy to identify in people we may know or meet. In a world where kids think they have to keep their invisible differences hidden, we disagree. More than ever before, our world is polarized, separated and less accepting. Thus, we fight daily for awareness, inclusion and compassion. We’re exhausted by people being ignored or judged because what makes them different isn’t visible at first glance. If you ask the naysayers or look in history textbooks, they tell you what we’re trying to do is impossible. So how do we make the impossible a reality? Because we’re fighting against ignorance, we do things differently. We lead with empathy and education. We don’t have unlimited resources, so we rely on relationships to spread our movement.   And it’s happening. Every single day. It’s happening through books, articles, television shows and films. It’s happening on playgrounds, in grocery stores, in forward thinking businesses, places of worship and in classrooms. Acceptance of invisible differences in growing. We are winning. We believe our invisible differences are part of our lives, but they don’t define us. We won’t stop until we change the world. This is our manifesto. A version of this post appeared on rshibbard.com. We want to hear your story. Become a Mighty contributor here .

R.S. Hibbard

Opening a Health Bill After My Child's Hospital Stay

One weekend. $32,000 in one weekend. Anxious eyes scan from $32,000 to the bottom account balance you may owe. “ This is not a bill ” it says. But the weight has already jumped into your stomach. The statement is the harbinger of the bill, the great gust of wind that slams and bounces the screen door open and closed, a squeaking Paul Revere: the bill is coming, the bill is coming! Yes, it was the 19th floor. No, not the penthouse. Yes, we had room service a couple times, but it wasn’t that kind of party; we didn’t want to be there. We don’t want this statement. It has my child’s name on it from the nearest children’s hospital. It has my name on it as the guarantor. I swallowed hard, as my brain flashed to the annual salary listed in my very first job offer-letter 20 years ago. This is more. It is more than my brain can imagine for a bill. Not true, I have seen bigger, as memories of hospital sleepovers past dredge themselves up. Still, it jolts me to see a bill with that many numbers next to the two digit utility bill. “You may owe $8500.” More than a vacation costs — we could buy a used car for that amount. A bill like that can do some major financial destruction. I jump to the computer, looking to see if it has been processed yet. I want to pray, but am unsure what exactly I am even asking. Will we owe that amount? Will it already be processed? My child is still awaiting a full diagnosis and we have another test tomorrow and five more specialists to see. I don’t know if I have enough adrenaline left for this life. Could my heart please slow down? Click. One more click. The explanation of benefits file opens. I realize I wasn’t breathing. Deep breath. Out of pockets costs have been met. Congratulations self, you just went from a $32,000 statement, to a “may owe $8500,” to only owing $2800. Only. The statement did its job in managing my expectations, as now the coming bill seems a little less like doom.   But my gut still feels punched because all I can think about is how fast and easy it is for a family to lose footing over health bills. I’ve scanned news articles this year, trying not to be scared about what is happening in healthcare and government while I am up to my ears in caring for my own family. I am exhausted, I can’t write to every politician or dredge up energy to loudly protest. Not today, anyway. Today, I can barely get dinner made and yesterday’s dishes are still in the sink. And there are more, so many more families like mine, so many parents like me. My husband gets home, and with the opposite of my panicked look, reminds me, as always, “It will be OK.” And this time, for us, it will be, somehow. I am grateful. I know I am lucky, privileged, blessed. But my heart still aches. It aches for my own family and how illness impacts each of us. It aches for the other families I know, struggling with their own illnesses and bills. It aches with a feeling of powerlessness, for all these things I cannot control, for the people I cannot help. Discouragement is amighty enemy. But this fight is far from over. Hope is a powerful four letter word. We want to hear your story. Become a Mighty contributor here .

R.S. Hibbard

Learning to Move Forward After a New Diagnosis for My Child

It is a gorgeous day. We even remarked on the way in to the check-up that it was a perfect sunny day. We breathed in the warm air, soaked in the sunshine, meandering through cars on the way into cool, clean, hospital air. I thought the day would pass like any other. Do the copay, be brave through the lab stick — regular visits are my child’s normal. But even our norm gets jolted sometimes. The doctor was quiet during exam, and it seemed his typing was lengthy too. I found myself already hoping it was nothing, just the usual thorough procedure. My daughter even questioned, “How soon will he be done?” My little star patient. And then he turned to me. Serious. Compassionate. And he quietly told me we had another change, one that requires the neurologist. We already see so many specialists, but oh, this one? The breastplate of new diagnosis clicked into place, a weight pressed on me, as has happened before. Always a normal day, turned abnormal. A parent with a chronically ill child knows the weight. It isn’t exactly fear, or sadness, not an instant heaving — it is a physical cloud, come to sit upon my center.   As I walk around, parking lot, grocery store, I know no one can see it. So I breathe deeply, wishing the extra oxygen would lift the weight. It is no use. I pray and give my worry to the Maker, but the weight still sits and settles. I call and talk to the nurse. The weight remains. Maybe it will last only until we have test results. Oh, but maybe it will be heavier then. Not knowing or knowing — either way, an answer isn’t always a cure. And for all the diagnoses so far, there is no cure, only slow acceptance. We’ve learned to move forward, and I am grateful they have been staggered. I could not have managed the weight of all of them at once. For now, I sit with solitary knowledge. Do I call my husband at work? Do I interrupt his day to bring him onto the team or do I wait until his day is done — protecting his “normal” for a few more hours? Life before diagnosis… was I light and carefree? No. Many of us live differently only after illness or death — for then we often realize what is most important in the mundane, and what is truly worth worrying about (nothing, unless you want to borrow trouble from tomorrow.) I can only live right now, in today, perfectly sunny and warm. Tranquil, but for the weight on my chest. Follow this journey on rshibbard.com. We want to hear your story. Become a Mighty contributor here . Thinkstock image by anurakpong