Two weeks ago, I woke up and looked at my phone: Orlando.
Such darkness in this world.
I’m a news junkie, and I usually read these stories — if only to honor the innocents. I couldn’t do it that morning, though. It was too much. I made a conscious decision to turn everything off and just be with Julianna.
On Sundays, I usually stayed home with J while Steve and Alex went to church. This was just another Sunday, but it seemed extra good.
I had extra energy that day, and we did everything she loved. We used chalk dye and colored her Barbie’s hair (rainbow colored, of course. J couldn’t let any of the chalk dyes feel left out). We made a funny looking flower out of fabric and a pencil (I’m not artistic, but add glitter, and J was happy). We played…how I wish I could remember what stories we made up that day.
We read Calvin and Hobbes and Fancy Nancy – the one about the wedding of the century. We watched…one of her shows. I wish I could remember which one it was. I hate that I don’t remember every detail, but maybe it’s because the day was so full.
We went on a walk. She picked me a flower. I decided to change out the wreath on the front door to something more summery. (Wreaths were kind of a thing with J. When we changed one out, she insisted on studying it, even if it meant keeping the front door open on a blustery day. This was a new wreath, and I would have been sad if she never got to see it. )
She wanted to watch me cook in the kitchen. I hardly ever cook these days! But that day I did, and she watched as the blender pulverized cauliflower into “rice.” We agreed, it was pretty cool.
One of her nurses (the one who had been with her the longest) came over for a few hours. She doesn’t usually work on Sundays, but this was an exception. J got one last good playtime, treatment and bath from a beloved nurse.
It was a perfect Sunday, and then it went horribly wrong. It became the worst Sunday of my life – and the last of hers. Just over twenty-four hours later, we lost her.
I started that day by deciding to shut off the news, and I haven’t been able to go back. I think it’s important to be informed, to be a “citizen of the world” and try to do good, but I’m discouraged. There is so much darkness out there, and my instinct remains to preserve all that is good and kind and loving: all the things that came naturally when focused just on Julianna.
To be honest, I’m angry. I hesitate to share this, because J was never one to get on a soapbox (except about messy hair). But I am angry about the ridiculous amounts of money spent on (fill in X, Y and Z – pick your poison) and the attention given to (pick again. There are lots of examples.)
Every day, children die. Some don’t have enough food. Some have diseases that don’t even have a name, let alone a treatment. Some are physically alive but emotionally neglected – what will become of them?
There are children and families who are fighting with desperation and courage. They make impossible decisions and hope for another good day with the ones they love. The strength to carry on during these kinds of days is supernatural.
And there are angels among us: peacemakers, nurturers, facilitaters. They sense a need and they help, generously and with love.
These are the stories I want to read about. Why can’t these stories be the ones to change the world?
Spend some time learning these stories (I am posting both with permission).
Meet David Spisak, a true hero.
David found love at age eight, and what a gift! He died a few months later from cancer.
(His mom and I connected because we both knew what it’s like to share our kids with the world and receive criticism from others who don’t approve of our impossible choices. This should never happen, but now I have a friend for life – because of our beautiful children. )
The journalist who brought David’s story won an Emmy. Strong work! Read it here.
Like Julianna, she has a severe form of CMT. She loves pink, and she has a brightness in her eyes and face. Her parents also call her “J.”
This other J also likes mermaids. Last week, we did something that brought me such joy:
This tail was lovingly made for my J by a kind stranger. It let my J’s imagination soar (see this). Now it is with another girl, and the chain of love continues.
Please…fill your mind with these stories. Spend your time, your talents helping someone who is struggling. Use your money to fight CMT, to fight cancer, to lend a hand. Listen and learn from children. They are our best teachers.
Another Perfect Sunday
Two weeks after our last perfect Sunday with Julianna, we travelled to the Oregon coast. The ocean heals, and so does love. We connected with family, and we celebrated a wedding.
There are some things in this world that are perfect: hold them tight.