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The Gala (Revised)

There are times, too many I fear, that emotions get the best of me and I don’t think before I speak, or write. I vomit out all that is running around in my head before I really look at the whole picture and process what I am feeling.
It is never easy to say you were wrong, but I find it much harder to hurt people who you love. And I would rather apologize a million times over and mend hearts than to walk around like nothing is wrong.
I finished writing a blog on the gala we attended this past weekend. I spent an hour writing out all that I was feeling over the weekend, allowing myself to stay in the dark place that I was in for far too long. Not only that, I allowed myself to bring others into my misery and hurt ones I love in the process.
I have deleted the blog, so do not bother looking back. But what I beg of you is to read this in its entirety so that you can read what I really should have written.
Though emotions and feelings are important and I have never been shy about sharing them, I was insensitive in how I delivered.
Instead of self-loathing and anger leading this post, I wish to let love and generosity reign this second chance. Because that is what life is full of, second chances. Times to rethink what I am saying, reevaluate what I was feeling, and consider others before myself.

This weekend was one of awe.

The reason I say that is because of two reasons.
First, we saw miracles occur.
What I mean by this is that in the dark alleys of our society and hearts, hope brought a light that should never had been lit.
DIPG is a diagnosis that seems without hope. With less than 1% survival rate, it would appear that there would be no room for miracles. But I saw them this weekend.
I saw a mother, just receiving news of progression by her sweet daughter’s doctors, stand before a crowd and share her story. Fear and anxiety vanished and only strength and love conquered as she told hundreds of people of  her hope and love.
I saw a couple beating the odds, holding hands, standing together, to share their love and joy in their son, also fighting. They kissed, they smiled, and they beat the enemy already that so badly wanted to tear them apart.
I sat with a father, broken, only a year ago, after losing his son to DIPG, now able to look up. He had knowledge that surpassed my own and deep wisdom that came from his continual fight for his son.
I saw miracles, but not at first.
At first glance, I chose to see despair and devastation. I wanted to feel anger and hopelessness, because in all honesty, I am sure that is what I was feeling inside.
But second chances allowed me to see miracles.

Secondly, I saw rallying.
A crowd of people rallied around a small group that were broken.
They wanted to help, they poured out love the very best way they knew how: by trying to rid the world of any more DIPG loss. They saw our kid’s faces and didn’t want to imagine the anguish they went through, but they went there because they knew it was the only way to understand.  They took time ouy of their busy lives, some with kids of their own who had soccer or school assignments to work on, to help decorate and carry loads that were much more than boxes.
They showed up, when others don’t.
I missed it at first.
I didn’t see their concern and genuine interest. I missed their hugs because I avoided them. I missed their kind words because I hid.
Why?
Love I suppose.
I know that seems like an odd answer, but let me explain.
I love Molly, Sam, and Clara with my entire being. That will never change.
But when Molly left this world, I had to navigate where to place that love. Perhaps I am still figuring that out. Though I still love her, I love her through other people and things. I love Sam and Clara more. I love my husband more. I love butterflies and purpe more. I love more because she gifted me her love to carry to others.
This weekend, it was too hard to love those that showed me so much love. It hurt because I could never love them back in the way they have loved me. I will never know their struggles. I will never know their pains. I cannot help them, but they have already helped me.

To those who show up on a daily basis and who showed up to the gala this weekend, all I can say is thank you. Thank you for loving me through my pain and hurt. Thank you for loving me through my ugly and sad. Thank you for offering up to me that which I could never give in return.
I look forward to another opportunity to watch your generosity flow through acts of kindness, serving, and generous gifts. Until then, I entirely plan to keep paying it forward and fighting along side of you.

4 thoughts on “The Gala (Revised)”

  1. The reason you have impacted my life is your honesty. You say what many feel but are unable to articulate. And I know you don’t live in the dark place all the time. Very difficult to understand the deep painful agony of the death of a child when that is not ones experience. You are one of the most genuine people I have ever met. I love that you don’t pretend but there is alway some graciousness and joy that comes through. Joy is not dependent on circumstance, it comes from within and while you and your precious family have been brought to your knees, the grace and joy of the lord has taken you by the hand and helped you to begin to stand tall again. How I wish we lived closer. Have a blessed holiday

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  2. Julie, You are a remarkable person and I feel blessed to know you. Whatever you are feeling is okay and you express it so beautifully and with heartbreaking and inspiring honesty. From the moment I met you I was deeply touched by you and your family. Even sharing a small part of yourself with others is a gift and is enough. Love to you and your family. ❤️❤️, Laurie Perlis

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  3. Thank-you Julie Beth. Both blogs were difficult to write, but the second more so. And because of that, it was all the more powerful. Loving and praying for you, Uncle David

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  4. Julie, I am in tears, which happens often when I think of Molly and your family. I learned about DIPG and watched its progression from your family and have since walked and prayed with so many other families. Thank you for what you do for other families. I am telling everyone that will listen that more money for more research is needed.

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