Friday, October 11, 2013

Building Fields, Moving Mountains.....

It’s quiet at 4:00 am. I’m on my deck, drinking coffee as I clear the cobwebs from my head. It’s cold, but I like the quiet time outside before the busyness of the day begins. To be honest, I’m waiting for the owl that I heard the morning Jillian died. Jillian comes to me in many ways. The owl is just one of them.

While I’m sitting outside, I allow my thoughts to wander. Just random, fleeting thoughts. I was thinking back to a year ago when Joshua ran in the Chicago Marathon in honor of Jillian. Sunday, Josh will run in her memory. I wasn’t thinking back then that Jillian wouldn’t be here today. The excitement I felt as Josh finished the marathon was not overshadowed by sadness. I was just proud. And Jillian was proud of her brother.

As Josh runs in his sisters memory Sunday,  I’ll be thinking of them having quiet moments together.  I’ll picture them holding each other up, supporting one another. I will once again be proud of my son for his training and dedication to a cause so personal to him, but I will be swelling with pride for Jillian as I remember her own personal marathon, and how she crossed the finish line a winner.

The owl didn’t come to me this morning, but a scene from the movie, Field of Dreams, did. Kevin Costner plays a farmer, Ray Kinsella, and hears a voice that whispers, "If you build it, he will come", and sees a baseball diamond. His wife, Annie, is skeptical, but she allows him to plow under his corn to build the field.

Where does this stuff in my head come from? Never mind. I already know. Or at least I think I do, so I’m going with it.

Education. Awareness. Cure. Hope. Fear. Tanning Industry. Grief. Determination. Anger. Jillian. Melanoma. Death. Life. Fields.  Mountains.

I started Jilly’s Jems for Jillian so the word “Cancer” could be a part of our everyday vocabulary. I knew Jillian would have a hard time talking about her illness. I wanted the “C” word in the open, but with a positive spin.  That  White Elephant  had to leave the room. Through it all, I’ve met the most incredible people who have become very dear to me.  Melanoma warriors and their caregivers , many of whom have started their own grassroots movements.

After Jillian died, our family started the Jillian HayesFoundation.  Another tiny speck in the world of Foundations. None of these grassroots groups are anywhere near being Susan G. Komen.  Not even close. We don’t have the funding, we don’t have the backing. But all of them have the passion and the dedication to make their voices heard.

The Billboard Campaign has become a very effective tool. By being  LOUD, we’ve been given several opportunities to educate and to spread awareness to melanoma. I believe this is the start of something I can’t begin to imagine, but I’ve learned long ago I don’t need to have all the answers now.

Please consider donating to Josh’s marathon. The money goes directly to the Jillian Hayes Foundation. We are small. The money will be used to fund the billboards for now.  Please help us to get LOUD!

I’m a dreamer. I’m asking. Thank you.


Thursday, October 10, 2013

Here I Am...

 Crazy. That’s what this past week has been. I’ve been on a roller coaster that insists on switching tracks. The ride holds the same sense of exhilaration and loss of control, but the rail's aren’t the same. Either way, I was left dizzy and disoriented.

Saturday was a magical day. Jonathan and Ashley exchanged wedding vows and started their new life together as husband a wife. The venue was spectacular. Set outdoors, with all of falls glorious colors on display. The groom was so handsome and anxious to have this beautiful woman as his bride. And Ashley. Ashley absolutely radiated emotion and happiness. So good and pure is her heart.  The love they share for one another was evident to a blind man. I’m so  very proud of both of them.

But even as we celebrated this happy event, there was an empty spot at our table. Push the thought under the tablecloth all you want, it demands attention. The white elephant in the room burst through my heart and into my world on Monday with a vengeance. Not to be ignored this time. Oh no.  I grieved openly for Jillian all day Monday. I spent the day remembering, crying, smiling, cursing and laughing.

And then I got busy. I had a speech to write for our trip to Lansing  on Tuesday. Josh and I were scheduled to testify before the House Regulatory Reform Committee in support of the House Bill, 4405 which would ban minors from using tanning beds. The experience itself was an eye opener. I wasn’t expecting a hot debate, but that’s how the show went.

There was only one testimony opposed to the bill, Joseph Levy, executive director of the International Smart Tan Network, representing the tanning industry. Right about here is when I began to see red. Misleading information blurred my vision. Jenni and Joshua and I kept exchanging glances, stunned by the testimony. Sitting next to my 20 year old daughter as tears streamed down her face in grief, fueled my fire. Red. Livid. PISSED OFF MAMA BEAR!

I settled down a little bit after West Bloomfield dermatologistDr. Kay Watnick told the committee bluntly: “I can’t even begin to refute what you just heard.” By the time all other supporting testimony was heard, we were short on time. Josh and I had our turn to speak, and I’m hoping we made a difference. The bill has a long, difficult journey before it becomes law. In any case, this is just the beginning as we build momentum and strength for the upcoming battles.

As I process the last few days, I think about our sermon a few weeks ago. Our pastor assigned us with a task. He asked each of us to take a walk in nature and find a rock and bring it home.  Hold the rock in your hand and say these words:

Here I am
Here you are
Here we are together

I found my rock when my dear friend Sheryl and I were in the UP, visiting Pictured Rocks earlier this month. I’ve always felt most connected to God when I’m outside enjoying nature. He talks to me then. But I was reminded again on Tuesday, that I don’t need to be outside to hear Him speak. I brought my Rock with me to Lansing. In my purse, heavy with His promise.

I’m arming myself for the next roller coaster go round’. Because there will always be one. And I’ve got my Rock.


Friday, October 4, 2013

Bean's In A Box...

For those of you who knew Jillian personally, I’m sure you remember her nick name, Jilly Bean. That name originated when she was a very young girl. Jillian was in perpetual motion, always with a ball in her hand, or between her feet. She scampered like the wind, never slowing down until dark. And even then, bedtime was a challenge. Jumpin’Jilly Bean.

That high energy followed her where ever she went. She was a girl with a true zest for life. And it was contagious. You couldn’t help but feel alive when you spent time with her. And happy, and silly. There are days when I cannot for the life of me get my arms around the idea that this energetic being is not sharing this world with us anymore, and that the force of who she was, is just….gone. Some days I just shake my head in disbelief.

I’ve been avoiding going through her things. They have been sitting in boxes upstairs in her closet. One day a couple of weeks ago, I put on my big girl pants and started to dig in. The first box I came to looked safe, labeled, “Jill’s Shoes”. The second, “Jill’s Coats”. One by one, I went through her boxes of clothing until I came to the one labeled, “Jill’s Dresser”. Inside the box, nestled on top of some of her personal items, were her wigs. I took one look at those wigs and snapped the box shut.  The memory of Jillian, Steve and I, as we went shopping for those wigs, slammed through my heart, making it hard to breathe. I recalled trying really hard to make the outing fun that day. It was precious to see Steve gently pull back what hair she had left, as he placed the wig on her head. It was a sweet, loving moment those two shared together, and I got to be a part of it. Fun? No. Sweet? Absolutely.

I put the boxes away, knowing they’d be waiting for me when I had just a little more courage to face them again. Throughout the day and into the night, the thought of those boxes lingered with me. I kept thinking, “This is her life. Jillian’s life in a box”. Everything she ever owned is in those boxes. I touch her things, and I can still smell her. But now, I can feel her. She is all around me, my constant companion. She’s not about to be stuck in a box. Nothing could hold her. No one could tell her what to do, how to behave or how to think.  She is still bursting through this world, making waves.

Our family is headed to Lansing, Michigan this coming Tuesday to share Jillian’s story in front of the Committee on Regulatory Reform to support Bill 4405. This bill would ban tanning beds for minors in Michigan. I know Jillian will be with us as we speak out in her honor, for all of those currently effected by melanoma, and for the many people who are unaware of the dangers of tanning beds.

Life moves forward. It just does. We have many reasons for rejoicing and many opportunities to choose Joy.

This weekend is my oldest son, Jonathan’s wedding. Saturday he will be marrying the love of his life, Ashley. What a celebration of love. Jillian won’t be there to celebrate in the flesh, but I know she’ll be there is spirit, dancing and carrying on just like she always did. The Circle of Life. New life, new beginnings.

Jilly in a box? No way.

Peace and Joy~