In one month, Julianna would have turned six. August 25th will never be just another day, especially this year.
When your child has a monstrous illness, birthdays can be tricky. I’ve had some marked by tears and bitterness (they mix horribly with cake) and others full with joyful gratitude (much better!). Last year was a good one, probably the best. It was special, and we knew it. (Think, for a moment, what your life would be like if you believed that every day is precious, and not a given. This is how you begin to truly live.)
This year, August 25th will obviously be different. I have thought a lot about it. How will it be? What should we do?
Sadness is inevitable, but it can’t be the overriding theme. I’m not trying to deny or repress or not “deal” with it. It’s this: Julianna would not have wanted it that way.
Julianna knew loss. She lived with a body that continually let her down, but she never felt sorry for herself. I don’t think that she even understood the concept. This didn’t comfort me at first. In fact, I resented it – why did she have to be so brave?
I’m not sure when it changed. All I know is that things got so much better after I stopped obsessing over “fair” and “right” and focused instead on the magnificent child right in front of me. She just wanted to play and hug and have fun. Above all, she needed to be loved and to give love. When I succumbed to her love (really, God’s love), everything became brighter and sweeter. Hope returned, and this is why we are standing today.
I didn’t put it all together until I wrote a letter to Julianna. After she died, I had an overwhelming urge to write — something. I needed to tell her that I was OK. I didn’t know why I was OK, but once I started writing, the answer was clear: LOVE.
And this, my sweetheart, is your greatest gift, your legacy. More than anything else, you loved. Your love was so expansive, so thorough, that it gave you a lightness and joy that was other-wordly.
Love is a superpower. It is the reason and the answer. It keeps broken hearts beating; it turns judgment into kindness, fear into courage, grief into joy; despair into hope. It is the greatest.
On August 25th, Steve, Alex and I will each do something that reflects and spreads Julianna’s love. We’re not sure what it will be just yet. It will probably be a small but personal act. Julianna made people feel special, and she had a way of giving you just what you needed – even before you realized that you needed it. It seems like a tall order, but we have a month to figure it out.
Please join us. Do something on 8/25 that would make Julianna happy and proud. It can be big; it can be small. It doesn’t have to cost a dime, but it will require kindness, some time, and perhaps some creativity. If you have a great idea, post it — on the comments, or the Love is a Superpower FB page. Or, keep it a secret (Julianna liked those too…).
Just do something.
(And buy a shirt too Available only until 8/11 — $20– all proceeds go to CMTA.