It’s Christmas Eve…and as I tuck away with all my loved ones to enjoy the blessings of this life, I reflexively ponder all the years that the light and joy of the season were shadowed by Arthritis . The years my daughter could not open gifts, and didn’t even care to get out of bed to see if Santa had visited. The year that my family saw her slowly hobbling, hot with fever out to the brightly lit tree, and understood…. really understood… what was happening to her body. The year that Santa could not leave the presents in a pillowcase at the foot of her bed as he traditionally does – because her pain and anxiety would not allow her to sleep more than thirty minutes… so Santa left the bag near the tree with a note saying that he understood and he hoped she would feel better soon. But that was then.
Now… we are blessed this year with great health. As a matter of fact, we broke a record by going a full calendar year with Caitlin in remission with no medications whatsoever. I don’t have an explanation at all – I wish I did. Because I know so many moms and dads who are gazing at the brightest star and wishing with the deepest part of their souls that Arthritis had never come into their child’s life. Into their family’s life. And as much as I treasure this year, this moment – I would be naive to think that I won’t spend another Christmas praying deeply that Arthritis would go away. So, it leads me to imagine my own George Bailey moment.
Perhaps it was a medication that failed. A denial from the insurance company for something that we were really counting on. A medical bill that blew our budget right out the water. Or just the daily, endless slog through pain, struggles at school, shots, more pain, swelling, damage and that look my daughter gives me. The one that says “You’re my mom. Can’t you make this better?” But I imagine myself on that bridge in a snowstorm, at the end of my rope. Crying and wailing and begging. Not wishing I had never been born like in the Christmas classic – but wishing that there was no such thing as juvenile arthritis. Begging to have the life that I had once assumed as a given – a life without chronic illness. And if Clarence the Angel came, and through his magic made that possible… how would that script play out?
Perhaps I would rush home to find that we are not living where I thought… because we moved specifically to our current house because it had a pool and Caitlin could do therapy at home. Maybe we are out of state, like we planned so many years ago…. but didn’t because the area we desired was too far away from a pediatric rheumatologist. Oregon! On a property big enough so the kids can finally have a dog!
Maybe I get home and find that my daughter is really tall, like the doctor predicted before she got sick. No prednisone! No titanium hips… no scars! And her room is filled with soccer trophies. And she’s not home because she is at cheer practice – the real competitive squad that is athletic and daring. She likes her PE class at school – which is advanced dance… and I don’t even know her school nurse’s full name.
Perhaps I find that I no longer know the number to the pharmacy, I don’t have the doctors on speed dial on my phone, and I’m not making monthly payments to five different medical companies. Instead of staying at a job with no opportunity for advancement because it has terrific health benefits and is flexible with doctor’s appointments – maybe I would find that I pursued Theater, like I studied in college.
I imagine that my family would look very different. Very different. My middle son might not be the empathetic child, the reader and artist – with so much patience that he can sit at a task for hours. Because those are things that were probably shaped in him because of Arthritis… honed over days in waiting rooms. Without it? Who knows? But I cannot imagine him any other way….
And my youngest? Perhaps he wouldn’t even be in the script. He was conceived one summer, when Caitlin was at camp for kids with arthritis. Hmmmm…. another gift borne from this disease?
And what of my friends? Those people around the country who I share JA stories and tips with…. what of them? Without arthritis, I never would have met them. I would not be inspired to quilt again because of Jeannine… or sing in the shower again because of Rosann. I wouldn’t have had the privilege of knowing Lauren as she graduated high school and college, all while battling severe JA. My kids would have never been to Washington DC to speak with our Congress members, and I probably wouldn’t know that Purple Power Rocks! I wouldn’t know families in Hawaii, in Virginia, Utah… all over the country and the world!
What of all the time we volunteer for walk, and Jingle Bell Run….would we have had another triumph as sweet as when Caitlin was able to actually run the entire 5K?? Would Dave have ever discovered his love of cycling if not for the California Coast Classic? Without the Princess Parade, that’s two fewer times a year that our whole family would get together….As a matter of fact, as much as Arthritis has shadowed joy over the years, it has also been the reason for so many good things. Really good things! Ironically, it’s the reason I am so hopeful. I see hope demonstrated by parents every day as they seek a better future for their child amidst very challenging battles. I se.e hope when we support each other, understand each other, lift each other up.
Don’t get me wrong. If Clarence came today, trying to get his wings and offering me that wish – I would still wish for no Arthritis. No Arthritis for anybody from this point forward, with no lingering effects from the years it was with us. Of course – no arthritis. A Cure, Prevention – it’s what fuels me, drives me. Of course, I wish for my daughter and all other children – the ability to wake Christmas Morning and literally run, skip and jump for joy without any stiffness or pain.
But actually, I would not be on the bridge in the snowstorm, begging for a different life in the first place. I would not be willing to send back what the past eleven and a half years have been, pain and all, knowing what I know now…..and risk losing the lessons, the growth, and the gifts that have come from this experience. It may be a survival tactic, but I’m satisfied at having become a person who is always looking for the silver lining. I would not want any other family, any other friends, any other sensitive sons (who understand that there is so much more to a person than what might be showing on the surface), any other brave, tenacious daughter.
I don’t need a middle aged angel seeking his wings to show me… This really is a Wonderful Life! With everything that comes with it…..
I wish you all blessings this season, health tomorrow and every day into the new year, and joy that is brighter than the pain. Thank you for always inspiring me, holding me up, and lighting my Hope.