As COVID-19 changes the world, my thoughts are a jumble.
Everything seems different now, but the themes are oddly familiar. Fear, isolation, uncertainty, lack of control, disruption of carefully laid plans – these are things I know well. Boredom and frustration too, along with a sense of incredulousness. How could this have happened?
We live in Washington state, one of the hardest hit here in the US, but in a county that has, so far, been largely spared. Our schools and most businesses are closed, and we’ve been urged to practice physical distancing, all in an effort to avoid the devastation that other countries have endured. My heart goes out to those communities and families. Though we are separated by oceans and tightened borders, we are connected by our vulnerability. It could have been us, and it still may be us.
Those of us blessed with health and security tend to think that it will always be this way. If we work hard enough, are nice enough and responsible enough, our lives will continue on a comfortable trajectory. This mindset, whether it comes from a sense of entitlement or just naïve optimism, becomes laughable in the face of reality. All of us, if we live long enough, will experience something that flattens us. It could be a novel virus or a novel gene mutation, a natural or manmade disaster, the death of someone you thought you couldn’t live without. Invincibility is a myth, frailty the human condition. This is the truth.
I learned this eight years ago, when I diagnosed and foresaw the thing that would flatten me, and it is why I know fear, isolation and uncertainty. But I know other things too, important lessons learned from a girl who, in her physical body, was the very definition of frailty. This girl had a breathless voice that barely registered above a whisper, but she taught a master class on the things that really matter.
She taught me so much, more than can be recorded on this blog or anywhere else. In this strange, unnavigated time, these are things I try to remember:
1)The best prayers are simple and honest:
J’s prayer, April 2015:Dear God, I love you. You are good. You are very good. Will you make me strong?
2. Prepare, but try not to fear:
“I have learned that control is mostly an illusion. We must try our best, of course, to protect the blessings we have been granted – but if our plans are obsessive and driven by fear, we can’t really live.”
3) You don’t have to leave home to have an adventure.
4) Humor can be found in even the darkest times, and it is a blessing. In the history of time, has anyone else quoted Vanilla Ice on her deathbed??
16 thoughts on “We’re All In This Together”
Your baby girls heart, the way she lived and loved is what I have tried, sometimes miserably to do. It is what is most important during the dark times. Love wholeheartedly, and dont be so afraid that you cannot truly live. Love is indeed a superpower. God bless you guys.
Amen. We have a son who’s had heart surgery and has other congenital issues….people have asked why we don’t panic…I explain that when our four-month old was in heart failure and our world turned inside out…we learned of fragility and isolation. Your words capture so much. Thank you, as always, for sharing your beautiful girl with us. And your heart. Much love.
Thanks for sharing Michelle 🌸 Take care x
Michelle, I will never forget your daughter. I remember everything you wrote about her, all the sweet and wise and funny things she said, and every beautiful photo of her you posted. Her sweet prayer brings me to tears each time I read it. She was the most magical girl.
I have a dear friend whose daughter, 16, is fighting for her life. My friend said she realized that her job was to find and create as much joy as possible in the circumstances, because her daughter might not ever know any other life. It makes me think of you and the wonderful life you gave Julianna.
I hope you and your family are well.
great advice, especially #2. Stay safe in WA. I think of J. often.
Thank you for sharing this beautiful reflection. Just what I needed to hear. Julianna continues to inspire us all.
Thank you for sharing. Love the prayer.
I thought about, “Ice Ice Baby” and smiled. A much needed smile. Thank you for this post, and may God bless and keep us all.
Yes! Exactly this. This whole COVID 19 situation has left me feeling numb. I thought at first it was apathy but I’m learning it’s actually because I care too much. This hits too close to home. Love to you and holding you close though we’re miles apart. Xo
Beautiful post….Julianna is still on my mind and in my heart….💜….she taught me alot about the positive side of Life….I am praying for those that are struggling through this new normal….😘
Thank you for the reminder ❤💕
AHEM!!! April 7 the moon is closest to the earth and it will be PINK! The “pink moon” event is coming soon! Couldn’t get more of a sign than that. 🙂
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I knew you’d have a new blog up post Covid! Thank you, I needed it! Please tell me Julianna’s Vanilla Ice quote? Her pictures bring me so much joy 🙂
Julianna was so wise. I needed some inspiration today and to read her “Ice Ice Bebe” and know that everything will be OK helps immensely today. Thank you J for all you gave and continue to give us!
I come back occasionally to re-read your posts to recharge my soul and to marvel at Julianna’s strength, gratitude, and wisdom beyond her years. Thank you for that gift. The life lessons I’ve gleaned from your beautiful daughter are priceless. Love truly is a superpower! ❤️