If you have seen Frozen 2 than you know the story line and becoming famous song is all about going Into the unknown. It is about facing your fears and literally and figuratively jumping into the unknown.
I don’t know about you but the unknown often scares the hell out of me. Seriously, I have spent the majority of my life using every tactic known to mankind to avoid the unknown.
Anticipatory grief. Check.
Control freak. Check.
Perfectionistic. Check.
Self-sabotage. Check.
Stay in my comfort zone. Check.
Chronic pain and illness make it tough to embrace the unknown. It is hard to set yourself free when you do have to be a few steps ahead to order to prevent bad stuff from happening to your body or worse your child’s body. When it comes to a connective tissue disorder, dysautonomia, or hypoglycemia there are a few things we work hard at avoiding…being in a wheel chair, having to be on a feeding tube, drop out of school or even death.
What can be worse than death? Well, one might say to have all of your dreams and passions taken away to be replaced with living day by day just trying to survive. I can hear it right now… “just change your dreams then.” When you are just surviving you are lucky to accomplish daily tasks of living let alone trying to accomplish a dream.
As I shared in my previous post my kids, Jake and Alivia are coping with and managing a handful of chronic pain and illnesses. My job as their mom is to do all that I can to ensure they do not end up in a wheel chair, they do not end up on a feeding tube, they do not have to drop out of school and they sure as shit are not going to die until their well into their golden years (although we had a few scary moments with Jake already). But more than that, I will do everything I can to help them achieve whatever dreams they have.
Two weeks ago Jake was participating in our county’s human society’s summer camp for the week. There he got to learn how to train dogs, play with kittens, hang out with a rat name Julio, spend a day learning about and riding horses, learn to advocate for all animals but most of all spend an entire week spending time doing what he loves…working with animals. Truly one of the best weeks of his life but I digress.
One morning I was driving him to camp and we were talking about a twenty-something year old friend of ours who also has EDS and dysautonomia. The kids were curious as to what they do for work. Unfortunately I had to explain to them just as I am on disability and spend my work day in medical appointments, our young friend does too. Jake asked “will I not be able to work either?” and Alivia asked “Will I not get to be a teacher?”
I could have broken down right then because inside my heart shattered. Instead I turned into a teachable moment. “Everything I do today is to help you get to do all you want to do when you are older. All of your appointments, the not letting you play the sports your medical team doesn’t want you to play. Not eating gluten or dairy. Wearing orthotics. It is so you can be a teacher Ali or work with animals Jake. To do or be whatever it is you want to do or be.”
A lightbulb moment occurred. While I could not see their faces I could hear in the voices how much they “got it”. What they do today will have an impact down the road. It was evident in the conversation that took place afterward, the energy they gave off how happy they were. They have a future despite their diagnoses.
I imagine you can relate if not for your own or someone you know who has chronic pain and illness but for COVID. There is so much unknown especially with the new school year right around the corner. Decisions are being made and then changed a week later. Polarized political stances. Weighing the options with no good winner. Families not talking to one another.
“What is best” is not even known anymore.
As parents we have a strong idea of what “is best”. Majority of the time we know what is best for our children and we do so with confidence. We do not have to second guess ourselves all that much. But all of sudden we no longer know what is best and when we start to plot out all the options it is a domino effect into something worse.
This is usually when I start watching cute or funny animal videos because I cannot handle the anxiety and stress. Seriously, I am logging hours of mindless animal videos in effort to not just pack it all up, guinea pigs included, and head out west until this all blows over. Hey, a girl can dream can’t she?
Reality is there is no right answer because we really are jumping into the unknown. But here’s the rub, we all are jumping together. We are not alone. Which when have to forge ahead into the unfamiliar I would prefer not to be alone. Instead, we can support one another even if when we do not always agree. We can have each other’s backs especially when the anxiety and fear becomes too much. We can find ways to life each other up, make each other laugh. We can pray for one another and together.
The last few months I have found friendships to be a critical part to my emotional well-being. I have gotten a lot better about reaching out (even in the middle of the night) for emotional support just as I have been there (also in the middle of the night) when a friend is in need of support. I usually suck at asking for help, for prayers. And for the sake of transparency, I used to be terrible at asking God for help too. It has taken vulnerability, trust and practice but today God and I talk all day long and into the night just as I do with friends.
In addition to the coronavirus I have had my fair share of medical upheavals as have my dear family members and close friends. It has been scary, confusing, heartbreaking and unfamiliar territory. Instead of crawling back into my rabbit hole with my mind swirling out of control, I reach out.
With the fear of the unknown ever present the only way to really live is to jump together, six feet apart of course, with God all around us. Together, we can do the best that we can for our kids, families, friends, ourselves and communities.
I may not look as good as Elsa does jumping into the unknown but I certainly have the strength and courage to do it because I am not alone.
Andrea says
Beautifully written, Ashley. Each of us are navigating this Great Unknown as best we can, waiting for an expiration date. At which point I will burn my mask, hug my grandkids, go to the movies
and walk through a crowd,