These last few weeks have been so trying for us all!! For me, it’s hard not to be propelled back four years to when Chase’s terminal brain cancer diagnosis destroyed my existence and much of what I believed in. Then 15 months later the worst of all outcomes occurred. Since April 30, 2017, I have had to rebuild everything while simultaneously seeking solid ground, balance, and purpose. Only my fellow bereaved parents really get the gravity of what that entails, and that’s okay. Yet, suffering life’s biggest loss also confers a small blessing: Absolutely nothing truly fazes me anymore. Am I worried about my loved ones getting sick? Holy heck yes!! Am I terrified of the potential loss of life? Overwhelmingly heartbroken and still in shock & disbelief. Is my business in shambles in 3 short weeks? Yup. Am I worried about our world economy and what is going to happen to it? Jeez, every day more so.
But I am okay, and I will be okay, because….Chase.
I will be 50 this year, that big half century milestone when we all seem to contemplate so much about life: Where we’ve been, where we are, and how we want to spent the last chapters of our life… Surreally so, Chase will have been gone 3 years next month. In early 2018, I moved from the home Chase lived and died in. Less than a year after the death of my son, I left an abusive marriage and became a single-income family— while simultaneously having to rebuild the business I walked away from to care for Chase (in one of the most expensive counties in the country). Somehow I am still here. Healthy. Housed. Fed. I laugh daily. I am loved. I even took a real vacation recently. Three years ago the notion of any of this would have been inconceivable, even anger provoking. And it took this long to be able to do it. Only recently has life seemed remotely sustainable, less stressful, more stable. And that’s relative of course. Words like “stable” mean only a fraction of what they used to mean to me.
As life emerged from the ashes, I vowed to be better. I had given myself two + years of just getting by. Enough Julie! You need to be better. So, a scant month ago my 2020 “bettering” goals were materializing: I was regaining passion for the work I love so much that helps people, reconnecting with my love for sport and competition, watching my living son heal, mature, and thrive, and experiencing flickers of joy in the midst of my inconsolable grief. “2020 is going to be good,” I would affirm to Ryder.
It’s depressingly ironic, but just like 2020–2016 was also supposed to be good. My boys had been in school for a few years, so I had been able focus on my career and my business was thriving! I had big plans for expansion! I was still able to be a hands-on mom and was finally achieving a sustainable work:life balance! The boys were healthy, happy, and having fun. Soon, I would even be financially independent enough to leave a toxic relationship and still survive. I had a plan. I felt in control and positive, even in the midst of my intense sadness of the impending loss of the family-life I so desperately wanted for me and my boys.
Well, 2016 didn’t pan out even remotely like the year I had planned. In fact, 2016 ended up as the second worst year of my life. In February, my perfectly healthy nine year old son was diagnosed with a type of brain cancer that was FATAL. Yep like 0% survivors. Most dead in less than two years. Now, pediatric cancer ALWAYS sucks, but when you scour the internet for a long-term survivor and you find only obituaries and kids in decline, it changes the ball game a little. Hope is elusive, there is no protocol, the doctors just tell you to do what you think is best for your family. It’s a living nightmare hard to describe. Then of course 2017 bested 2016 winning in the award category: “The Worst Year of My Life” when we lost Chase. Sometimes I have thought that perhaps 2018 was even worse since Chase wasn’t with us for any of it.
Fast forward through 2.5 years of the giving it best I had even if my “best” felt like a paltry excuse for living, and I was in 2020. Feeling modestly hopeful. Working hard. Helping people. Rebuilding. Redefining. Surviving. And then…
But guess what? I already know all I need to know about how to cope with this. I learned it from my son Chase and the blissfully wonderful and brutally painful experience of being his mother. So I share the 8 Lessons about incurable evil cancer and child loss that parallel what you may learn from your personal experience with COVID-19.
1. You ask, “Why???!!!”
Um, you don’t want to bother with that question because it will drive you insane. Even if you believe that everything happens for a reason, that won’t make sense right now, and maybe it was never true anyway. You believe in God? Good for you!! Because those “God’s plan” and “God is always good” platitudes are flawless. For the rest of us, the truth is that there is no answer to “Why?”. It’s random. And even for the faithful, you might not believe in God anymore after this. It sucks that much.
2. You realize that your world can change in a second, no matter how you try to control that.
Of course you need to do all you can to create a life with stability, but we all just have to accept that tomorrow it all could change through no fault of your own. No one is immune. So YES, it can and does actually happen to people just like YOU.
3. You think you will never make it through this nightmare.
Even though it might seem like the end of the world, you WILL survive this. Somehow even though your world is shattered-tomorrow will still come—and you will wake up. Then, you will get up and do your best, even if that best sucks that day. Eventually days, weeks, months, years will go by and you will still be here.
4. You learn that stressing about tomorrow robs you of today.
Today is the only day that you can soak in anything and anyone who is good in your life. If you spend your energy worrying and obsessing about the gloom that tomorrow may hold, you will miss TODAY. Today may be the last good day in your world and wouldn’t it suck if you blew it and missed things because you were too wound up worrying about tomorrow? Be present. Even if today already sucks, just like Chase taught us-there is always something good to find in all the bad. Look for it. Cherish it. Because tomorrow it could all be different.
5. You realize that someone always has it worse than you.
That’s not necessarily supposed to make you happy, but it’s true. Feeling sorry for yourself? Think you are suffering harder than anybody ever? Wrong. There are many who have it worse than you (heck, if you’re reading this you have Internet?! Just that suggests you don’t know how good you have it if you think no one is suffering like you). Try to help others who don’t have it as good as you. It will remind you how good you really have it.
6. You wonder: “What will life be like in 3, 6, 12 months?!”
Sorry, folks you are not allowed to ask that because nobody knows. You can look at statistics and history to help you, but understand that statistics don’t apply to individuals. Your outcome may be wildly different. So you could fare way better than the statistics or be the outlier on the other end of the spectrum. You don’t have much if any control over that. Sorry.
7. You fret: “What is the right decision?!?! What the hell should I do?!”
Well, that’s your call. No one can tell you the best thing for you and your family. You do what you think is best; there are no proven success stories. You’ll never know whether another choice would have been better. You will just have to live with it-trusting you made the best decision you could at the time with the information you had.
8. You scream at the universe: “When will life be normal again? I want my life back!”
Well now, I do have an answer to that: Never. Your life is now forever different. You don’t get it back. You will find a new normal, but your world is completely transformed. You will have to redefine everything and create a new life. You will now partition your memories as “before” and “after” this happened. You will look at the person you were before and almost not recognize her, that naïve soul who had no idea that life was about to hurl her off a precipice with no chute. The good news? You will be wiser, more compassionate, and more appreciative of every one of life’s banal minutiae.
So all in all? Life can really f-ing suck! You didn’t do anything to deserve this. It just happened and you have to deal. I know you didn’t sign up for this shitty life story.
So, from now on you are to think primarily about the present and not dwell too much on tomorrow. Meaning neither should you overly look forward to it—nor should you intensely fear it. Tomorrow will be what it will be. Because the future is not really under your control, the trick is to react to today the best way you can.
By the way, be prepared to witness the best and the worst of humanity. You will see acts of kindness and heroism that will give you unwavering certainty that humanity and love are the most powerful life forces in us all and the human race will prevail. Right next to that you will also see things that may make you equally certain that we are lost, ruined, and doomed. When this is over you will have decided which is true. My hope is that it’s the former.
Thanks Chase, for being my beautiful son and most influential teacher. We miss you.
Stay safe, stay home, stay well, stay positive.