The Lone Frontier
Last weekend, during, what became an incredibly, excruciating, painful 48 hours of post surgery, sans pain medication (because too many people in this nation have abused the privilege of pain relief) and non stop crying, I asked Shelbie to take me on a drive. Just drive.
I laid back in the front seat with a pillow propping up my half dead shoulder and a blanket across my lap. We ended up in the middle of a deserted wildlife refuge. Deserted of people only, but teaming with amazing sites of Elk, Moose, Porcupines, Pheasants, but the most incredible sight, 8 Bald Eagles, coming in to roost for the night. I have only seen a Bald Eagle once in my life, while on a drive back from Salt Lake a few years back and as he landed on the edge of the highway, it took my breath away!
Here in the middle of nowhere, some 50 miles from my house, we sat and watched these Eagles arriving from their long day of doing what Eagles do best. The air was still and snow drifted down and it felt like we were insulated from the noise of the world, as we watched these majestic birds circle around us. It was so quiet and we were so alone and I kept thinking how sad it was that no one else was standing there with us, witnessing this rare, incredible scene of migration of this grand bird.
Today is International Rare Disease Day. The day set aside to 'celebrate' being a 'Zebra'...the rarest of the rare among us in the world of genetic disease. In the past, I posted on social media some tribute of sorts to the life my kids live. This year, it feels like a lone frontier. It doesn't matter to me anymore. It's like finding yourself on a deserted island; until you develop some context for the space, everything could exist there, yet nothing belongs. There is no defining space that says, "This is where you belong." "This is your home." "This is yours."
I've tried to embrace the world of rare disease. I've tried to fit into the world of fellow zebras. I've searched out and immersed myself in the world of support from a shared experience of disease but no matter how much the same you think you are, you aren't. You can try to draw a similarity, come to a familiar conclusion but the truth remains, you can exist there, but you don't belong. You can imagine that you have a system of friends and supportive people that must understand because they too battle life out in a doctor's office, yet even they can, at times, question your decisions.
It's a lone frontier and sometimes, you stand there and take it all in...alone.
You find awe in the grand design of how the human body keeps going. Your breath is taken away time and again as you wonder how it is that no one else stands by to witness this; the grandeur of it all, the miracles big and small, the tears, the heartache, the way we just keep going. I could write chapters upon chapters of the hard things we face daily, literally daily but for what?
It's hard to believe that after 26 years of this, we still struggle to define our place in this journey. I can't decide if I wish it were different. It just is. For now; like never before, it just is. I'm letting this thing that just is, be the thing that can't be contained, let alone understood. I run from it, I run to it, it's heartbreaking and heartwarming. It's an ambiguous bundle of potentiality and all we can do is stand on the edge of it, in wonder that we get to live it, even when others don't see the majesty of it all.
I laid back in the front seat with a pillow propping up my half dead shoulder and a blanket across my lap. We ended up in the middle of a deserted wildlife refuge. Deserted of people only, but teaming with amazing sites of Elk, Moose, Porcupines, Pheasants, but the most incredible sight, 8 Bald Eagles, coming in to roost for the night. I have only seen a Bald Eagle once in my life, while on a drive back from Salt Lake a few years back and as he landed on the edge of the highway, it took my breath away!
Here in the middle of nowhere, some 50 miles from my house, we sat and watched these Eagles arriving from their long day of doing what Eagles do best. The air was still and snow drifted down and it felt like we were insulated from the noise of the world, as we watched these majestic birds circle around us. It was so quiet and we were so alone and I kept thinking how sad it was that no one else was standing there with us, witnessing this rare, incredible scene of migration of this grand bird.
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| PC: Camas Wildlife Refuge We didn't take a camera but this is exactly what our view was. It was overwhelmingly beautiful and staggering to see these rare, majestic birds in such great number! |
Today is International Rare Disease Day. The day set aside to 'celebrate' being a 'Zebra'...the rarest of the rare among us in the world of genetic disease. In the past, I posted on social media some tribute of sorts to the life my kids live. This year, it feels like a lone frontier. It doesn't matter to me anymore. It's like finding yourself on a deserted island; until you develop some context for the space, everything could exist there, yet nothing belongs. There is no defining space that says, "This is where you belong." "This is your home." "This is yours."
I've tried to embrace the world of rare disease. I've tried to fit into the world of fellow zebras. I've searched out and immersed myself in the world of support from a shared experience of disease but no matter how much the same you think you are, you aren't. You can try to draw a similarity, come to a familiar conclusion but the truth remains, you can exist there, but you don't belong. You can imagine that you have a system of friends and supportive people that must understand because they too battle life out in a doctor's office, yet even they can, at times, question your decisions.
It's a lone frontier and sometimes, you stand there and take it all in...alone.
You find awe in the grand design of how the human body keeps going. Your breath is taken away time and again as you wonder how it is that no one else stands by to witness this; the grandeur of it all, the miracles big and small, the tears, the heartache, the way we just keep going. I could write chapters upon chapters of the hard things we face daily, literally daily but for what?
It's hard to believe that after 26 years of this, we still struggle to define our place in this journey. I can't decide if I wish it were different. It just is. For now; like never before, it just is. I'm letting this thing that just is, be the thing that can't be contained, let alone understood. I run from it, I run to it, it's heartbreaking and heartwarming. It's an ambiguous bundle of potentiality and all we can do is stand on the edge of it, in wonder that we get to live it, even when others don't see the majesty of it all.
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