Tuesday, December 31, 2013

Reflecting On 2013...

It’s the last day of 2013. I don’t have the words to recap this year. I do have one word that jumps out though. Healing. This has been a year of healing. No. That isn’t true really. Hell is a better descriptor. Learning to live without Jillian has been by far, the hardest thing I’ve ever had to do. It has taken a superhuman effort to engage in everyday activities and to stay present. Healing through Hell.

I prayed this morning for the right words for this blog post. I thought it was appropriate to write one last post for the year. I had no clue what to write about as my heart was full and the words wouldn’t come. This happens a lot. In those moments I just stop and pray.

 As I opened my Pandora, the song from Rascal Flatts was the first to play. “ I Won’t Let Go”. Wow. Well, that song took me back to over two years ago. Jillian had just texted me, “Look at your Facebook”  In the world of a young person, texting becomes a way of communication. You either join in this crazy form of communication, or you don’t. I’ll take it any way I can get it.

Steve had posted the song to her FB page. She told me later that they didn’t really talk about the song, he just played it for her. No words were necessary, they spoke through music. Just as much as Jillian needed to hear that song from Steve, I needed to hear it this morning.

It's like a storm 
That cuts a path 
It breaks your will 
It feels like that 
You think you're lost
But you're not lost on your own, 
You're not alone 

I will stand by you,
I will help you through
When you've done all you can do
and you can't cope
I will dry your eyes,
I will fight your fight
I will hold you tight 
and I won't let go

It hurts my heart to see you cry
I know its dark this part of life
Oh it find us all and we're to small
to stop the rain
Oh but when it rains

I will stand by you,
I will help you through
When you've done all you can do
and you can't cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won't let you fall

Don't be afraid to fall
I'm right here to catch you
I won't let you down
It won't get you down 
You're gonna make it
I know you can make it

Cause I will stand by you,
I will help you through
When you've done all you can do
and you can't cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won't let go

Oh I'm gonna hold you
and I won't let go
Won't let you go
No I won't

The road this last year has been long, dark and cold. The past few months have been extremely difficult as I’ve worked through all the tough memories of Jillian’s last year on earth. All the struggles as she started to go downhill. All the fear. All the pain. And her death. Her last breath on that dark December morning, holding her, loving her.

I’m reminded once again that even though I’ve had to work through my grief alone, in my own way, I’m not alone. I never was. It takes me but a second to realize I’ve got people out there supporting me, praying for me, praying for my family. I want to thank all of you for your unending support and love. Your kindness really has made a difference.

I’m not sure what next year will bring, but I’m moving forward. I’m standing, I’m fighting, and I’ll win. We’ll win.

~Peace and love for 2014!

Tuesday, December 17, 2013

Personal Thumbprints....

I’ve been thinking a lot about the act of grieving. Oh, I know. Big surprise. As the month of December moves closer to the 29th, the one year anniversary of Jillian’s death, I’m thinking about those who are dealing with loss.  Especially this time of year. As others are making joyous preparations for the holidays, there are just as many that don’t feel like participating in festive activities because they're grieving.

 The loss and grief may be that of a loved one who won’t be joining them this year for Christmas. It may be grief from a cancer diagnosis as they deal with the loss of innocence in the knowledge that life will never be the same.  Maybe it’s the loss of a job, or it could be the loss of a relationship, the breakup of a marriage. 

Mourning. It’s a pretty big deal! Stop for a minute and think about it. For years there have been customs and traditions surrounding the bereaved. There is something to this thing, and our society feels the need to rush the process. Why is that? I don't know, but I don't like it. 

In the United Kingdom widows were expected to wear special clothes to indicate they were in mourning for up to four years after the death.

In areas of Russia, Czechoslovakia, Greece, Italy, Mexico, Portugal, and Spain, widows will wear black for the rest of their lives. The immediate family members of the deceased will wear black for an extended period of time. 

Some cultures require wearing black for at least two years. Other cultures hang black wreaths on their doors.  

There are many different ways people move through the grieving and mourning process. None of them are wrong. Grieving is as individual as your own thumbprint.

I've been like a sponge these past few months. I'm trying to soak in all  the memories of Jillian that I can. The good and the bad as I'm reminded of what took place at this time a year ago. Its a part of Jillian and her journey and demands remembering. 

There are some that may think I should try and push those difficult memories aside and focus on the happy ones. NO. For me, I'm doing it this way to honor and respect Jillian. It helps me to remember her fight and to reflect on how she loved and lived her life to the fullest. I'm doing the work now but that doesn't mean it's right. It doesn't mean it's wrong either. But its my way, and its right for me.

So if you know of someone suffering from loss this Holiday Season, the best thing you can do for them is to tell them you're thinking about them. Be gentle with your words. Give a simple hug. Ask a question or two about their loved one. I can assure you, it is their favorite topic.

Please don't tell them what they need to do, or what not to do.. Don't tell them where you think they need to be in their grieving process. Don't suggest that it's time to move on.You may end up with Eggnog on your lap. Your intentions may be admirable but it isn't what they need to hear.

You probably haven't seen that black wreath hanging on their door either, but it's there. My guess is that they are too wounded to point it out to you.   

As I was watching the snow fall gently to the ground today I felt "Joy". It's these moments I'm not taking for granted. I haven't forgotten what Joy feels like. I'll get there, promise. One snowflake at a time.


Monday, December 16, 2013

Hope, Peace and Joy....

Christmas has always been a magical time for me. I’ve loved giving  gifts and making traditions for my family. This year it’s been a struggle for me to feel the same sense of wonder, the same joy I’ve had in years past. I’m looking, but it’s been elusive.

 I’ve felt a little put out with all the hype surrounding Christmas. The busyness, the rush for the perfect gift, the perfect price. The commercialism surrounding Christmas.  I talked to Rev. Carol about the subject and she summed it up by suggesting that I see things through “Jillian Colored Glasses”. I believe that is true.

I think about Jesus’ mother, Mary. I wonder what she was thinking as she watched her precious baby sleep in the manger, knowing he was the Chosen One. How did she feel as she raised this boy? What fears did she have? What was it like for this Mother to watch her child suffer? Even though Mary knew Jesus was the Son of God, she was  human. She was a mother , and she must have grieved deeply for her Son.

I’m praying for all mothers this season. And fathers, and sisters, brothers and daughters and sons. For all those who are going through the motions this year, trying to find joy in the season.

I believe in Miracles. This holiday season I'm going to continue to keep my eyes wide open so they don't go unnoticed. The beautiful, quiet snowfall, the owl in the morning... Our children. Our family and friends.

How beautiful it would be if we could see the world through “Jesus Colored Glasses”.

~Hope, Peace and Joy

Thursday, December 12, 2013

Simplicity Without Answers....

I don’t have the answers. My mind isn’t capable of grasping the full depth and meaning of life, even if I were given the opportunity to glimpse into God’s window. The universe and it’s majesty are just too big. I’d miss something, and I don’t want to miss anything. I’m not quite ready for His revelations.

December. It’s snowing outside, and absolutely beautiful in its simplicity. Last year, in August, Jillian asked how long she had to live if her treatments didn’t work. She was told that she may not see the snow fall. Well, she did, and I’m thankful for that.

 I look out my window at those huge white flakes and I’m reminded of her, and how she loved the snow. How she loved snowboarding with her friends. I’ll always remember Jillian when I see the beauty of a snowfall and its Simplicity.

Every single day since Jillian’s birthday in September, I'm reminded of things that happened a year ago. And dammit, the memories haven’t been good ones. I’ll be working, or in church, or driving, and random memories just flood my mind. I can’t stop then from popping in for a visit. And I don’t want to.

I remember how her left foot turned in on her wedding day, and how I was afraid she’d fall and break her ankle. I was reminded of the “Buffalo Hump” between her shoulders from all the steroids she was taking. I think about her short term memory loss from all the brain radiation and how frustrated she was. How difficult it was for her to concentrate just to unpack some boxes after she and Steve moved to Gobles. The thought of emptying them and putting them away was overwhelming to her. These are just a handful of memories I’ve been grappling with.

The other day I panicked. I dropped my cell phone in the toilet as I was cleaning. On that cell phone was a voice message from Jillian I had saved. I haven’t been able to listen to it yet, but I knew it was there and I know what it says. I had her voice just waiting for me when I was ready to listen. My very own treasure. I tried to get my phone to boot up, but it wasn’t working. I was devastated. I’d lost her. Again. Oh…..
I put the phone in a bag of rice, and was able to retrieve the voice message the next day. Whew!

Years ago a friend and I trained for a marathon in San Diego. I injured my hip during training and was unable to complete the training and compete in the race. I haven’t been running since, unless you count last May, when I participated in the Fifth Third River Bank 5K Run in honor of Jillian. I ran side by side with my grandson, Spencer. If you could call what I did as running. I walked most of it, Spencer running circles around me. This year, Spencer, Kaytie, Jenni, Josh and whoever wants to join us will be running again. I’m committing to a 10K. Ugh. I don't like to run anymore.

I went to the gym last night, and as I’m on the treadmill listening to my iPod, I hear some songs playing that I hadn’t loaded to my playlist. I have no idea how they got there. I can only think that Jillian must have loaded her playlist onto mine somehow. As I’m listening to the lyrics, I realize this was what she listened to while she was jogging last year. I was given a glimpse into her head: 

"Just one more day, one more day...
Let the world crash, love can take it.
Love can take a little, love can give a little more.
I'll stand beside you, never leave, through it all.
Faith will bring a way to the impossible"

There are several other songs that I wouldn’t normally listen to, but I’m going to listen to each one now. Jillian and I will be running together while I train. I will feel her close to me. I’ll  feel her pushing me on as I hate every minute of this running thing. I’ll think about her and  inspire to be as strong as she was, and to persevere even when I feel like I can’t run another step.I will push through it.

And I’ll think about all the other melanoma warriors I’ve grown to love, and how they battle each and every day with one demon or another. Whether it’s a physical demon, or a mental one as they struggle with this heinous disease. And I’ll hurt with them. And I’ll remember.

So, no.  I don’t have the answers. But I do believe I was given a gift last night.  I don’t need Jillian’s voice message on my phone to remind me that she’s here. She’s been here all along. Like my friend Becca said,
 “ She keeps finding a way to send love to you, doesn’t she?”

Yes. She does.
I’m not alone. None of us are.

~Peace and Love

Tuesday, December 10, 2013

The Tanning Giant.

Why do I write? This thought was running through my head this morning while I was reading a beautiful email from a new found friend. I look back when Jillian was first diagnosed with melanoma and remember my thoughts at the time. I’m  wondering,  how am I going to help Jillian? I knew she would be up for the physical battle ahead of her. I was more concerned about her mental battle. Jillian was private when it came to her inner feelings. It was hard for her to share. Much like me, really. I was private, I didn’t want myself on display. I didn’t want to appear vulnerable. So by opening myself up and sharing all the crap, I  became Jillian’s voice in a sense. What I’m about to share today, is loud. I think Jillian would approve.

Last week I posted a question asking if there had been any lawsuits filed against the tanning industry from the victims of melanoma. That question prompted an attorney from Ohio to reach out to me, offering to share some insight. He mentioned that if there have not yet been suits filed, there will be. He had been one of the young grunts for some tobacco defense teams, and sees some similar issues between the two. He agreed to be a guest on my blog, laying out some steps for those who may be interested.  Below is Jeff’s article. Thank you Jeff, for your willingness to help.

Considerations in Suing Sunless Tanning Salons and
Tanning Bed Manufacturers

by Jeff Roush
            I am a lawyer, and got my start representing a large tobacco manufacturer in litigation over claims allegedly made by that company and others in the industry about particular types of cigarettes.  That experience opened my eyes in a number of ways, particularly regarding the tactics both sides used in litigating complex issues.  Attorney-client privilege prevents me from revealing any communications or secrets regarding that litigation or that client, but I can say that many of the arguments made in the cases in which I was involved relate directly to what one may face when taking on the sunless tanning industry.  While I know I am writing for a dedicated fighter against this industry, someone I absolutely support in her mission of education against the harms of self-tanning, I will look to take a neutral approach here, laying out the key arguments each side will make and what points litigants need to win to succeed in their personal fights.

Finding a Lawyer
            You are an individual suing an industry, potentially involving the individual tanning salon, its parent company, the manufacturer of the tanning bed or beds used, and even a parent company of that manufacturer.  Depending on strategy, each of those companies may hire its own lawyer, or they may pool resources to hire one firm to represent everyone.  Against this combination of experience and money, you may feel alone. 
You need a seasoned attorney on your side to help even the odds.  This means doing your research.  The attorney you select should have a record of winning cases against businesses.  Ideally, if not someone experienced in suits against the tanning industry, it should at least be someone holding experience in products liability cases: represented plaintiffs suffering from disease or injury caused by a product.  You want someone who is tough enough to stand up to strong-arm tactics from the defense, and yet capable of making the emotional argument along with the logical.  Your local bar association can be a tremendous resource in identifying the right person to represent you.

            The threshold issue you need to show, aside from the fact that you or your loved one has been harmed, is causation: did the defendant (or one or more of the defendants) cause the injury?  Our understanding of the science of ultraviolet radiation has developed to the point that we know the dangers tanning beds pose.  For those suffering from skin cancer resulting in part from use of these beds, this helps with part of the battle. 
            That said, you need to show more than that sunless tanning was one potential cause, or even more than that it was definitely part of the cause.  Defense lawyers look to cast doubt on the claim, pushing to the point that it is as likely or more that something else caused the injury.  Other potential causes will be investigated: other salons, other manufacturers, and old-fashioned sun tanning.  You’ll be asked about how often you or your loved one used sunscreen, and what other steps were taken to lessen the risk from other sources.
Your best chance of success, then, lies with showing the bulk of the tanning you or your loved one has done was with the defendant’s salon and/or product.  If you can show this, demonstrating causation becomes easier.  You don’t have to have been perfect, and the worst thing you can do in court is lie.  But have your information lined up and be prepared for an attack on the irresponsible behavior of the person suffering from skin cancer.  It may feel odious, but you should expect it and prepare for it going in.

Warnings and Assumption of Risk
Knowing use of a dangerous machine allows the defense to claim the person suffering from cancer made a conscious choice to risk the consequences of skin diseases, up to and including cancer.  For most laypeople, this sounds like “blaming the victim,” and certainly an element of this comes in.  From the manufacturer’s perspective, as well as the salon’s, they are making a legal product and providing a legal service.  If they provide warnings of the dangers associated with that product and service, and a person chooses to take that risk, the financial impact of suffering the injury that person was warned about falls on that person.
This argument works very well.  The defense may play on the jury’s sense of personal responsibility, and may go so far as to try to paint the person suffering from cancer as an irresponsible, vain person caring only about his or her appearance and dismissing known risks.  And if this attack goads you into getting upset, you run the risk of looking irrational as well.
One way to attack this defense is to look at the adequacy of the warnings.  Were they visible on the product?  Was information distributed at the salon?  How informed was the person tanning before he or she proceeded?  Assumption of risk becomes a weaker argument if the warnings were not given by the manufacturer or the salon.  If anyone downplayed those risks before the tanning sessions began, or referred to it as “safer” than sun tanning, that can help you as well.  In other words, the best counter to assumption of risk is to show that you did not really know or appreciate the risk.
That counter can be even stronger if the person suffering from cancer began these treatments as a minor.  One major reason tobacco plaintiffs make claims of youth advertising against that industry is that younger people are not held to the same decision-making standards as adults.  If a minor was allowed to attend tanning sessions without a parent’s consent, assumption of risk becomes much harder for the defense.  You will, of course, need to determine (or have your lawyer tell you) what in your jurisdiction makes someone a minor for these purposes.

Time and Money
            Early resolution does not occur in these cases.  You need to prepare for a long fight, possibly taking years.  And while big trial verdicts tend to make headlines, they are rare.  Defense lawyers count on the expense of litigation hurting you before it hurts their clients—and in most cases, they are right.  Stay patient, and plan for a long road. 
            More than anything else, though, you need to believe: believe that you are right, and believe that you will win.  Your case is about righting a wrong, while the defense’s case, whatever bluster they give, is about money.  Remember this, and keep fighting.  Our legal system is not perfect, but if you persevere, it can serve you well.

Thursday, November 21, 2013

Walking and Remembering. Charlotte, NC, November 2013

The walk. The AIM at Melanoma walk in Charlotte, NC on Saturday, November 16, 2013. One of those life experiences that brand us and mold us into who we are. At least that is true for me.  I’ve spent the last few days processing the weekend.

The journey began Friday at 5:30 am. I drove across state to pick up my friend Becky, and from there we drove to Cleveland to grab Sheryl. The three of us barreling south, eating peanut M&M’s while listening to Blake Shelton. Conversation among three women, the comfortable silence, the introspection that happens when you’re driving for hours and hours. These women didn’t know Jillian well. They know me, and they knew how important this walk was going to be for me. They wanted to be there. For me. I love these women.

                                                           Becky, Me, and Sheryl

The phone call from Reverend Carol at 7:30 that evening,  “ Where are you”? Only 15 minutes away! Fifteen minutes away from the hugs I’ve been waiting for. Fifteen minutes from meeting the most incredible people I’ve been in contact with the last two years. The people that have helped me navigate through the belly of melanoma, and the ones that are still helping me today.

Bossy and Crabby

        Sandy Klein and her husband     

   Tara Gill, Mark Williams, Rev Carol Taylor
     Cindy Meadors Rutledge, Sandy Klein, Me,

Men in Black 

                                                            Rev Carol and Tara Gill

I think about the crazy busyness of our lives. I'm observing people as they go about their daily responsibilities. Focused. Organized. Get it done. Rush, to the finish. I used to be that person. Too focused on myself to really realize what was going on around me. If I heard that someone was walking for a cause, or organizing an event, my thoughts would be more in  line with, “That’s nice, but I’m too busy to get involved with that right now”. Or….”I’m glad I don’t have to do all that work”. Or….just nothing at all. I had no idea what was behind their particular cause. I didn’t realize the passion, the conviction or even the pain associated with the decision to get involved. Was I too busy to care? Sounds like I was. 

                                                         The Family of Katy Ault Phillips

The melanoma warriors I met this past weekend traveled from all over the United States to meet and to walk for their passion. Colorado, Oregon, Illinois, Texas, Oklahoma, South Carolina, Georgia, Ohio, Wisconsin, Michigan. Was it easy to be there? No. Would we change it? Never. There is unity here and a connection wound so tightly,  nothing can unravel it. I am absolutely humbled to be a part of this movement, and a part of this melanoma community. Jillian’s death has taught me to dig deep. To reach in as far as I can to try to connect until I get it. Sometimes it hurts. That’s not true. Most time it hurts, but the rewards are tenfold. 

                                                       Standing/Walking United

Thanksgiving is right around the corner. I’ve got much to be thankful for. Even for the pain of growth and understanding.


And Martha, this is for you. Because you asked. My Speech:

Good morning everyone. It truly is an honor for me to be here with you today. 

I’m Susan Hayes, and I’m Jillian’s mom. I was planning to attend this walk last year in honor and in support of Jillian as she battled stage IV melanoma. I was unable to make it, because Jillian had taken a turn for the worse.  I needed to be home with her.
This year, I’ll be walking in Memory of Jillian. Jillian died on December 29, at the age of 23. I’m not happy about that.

When Anne invited me to speak today, I asked her what she wanted me to talk about.  Her response was, ”Just share Jillian’s story. Talk about her motto, Fall Seven Times, Stand up Eight”. Well, that’s’ easy.

Jillian was 19 when she was first diagnosed with melanoma . She had a mole on her back that had begun to bleed. After the mole was removed , we waited for the pathology results. We were not prepared when we heard the words, It’s Melanoma. Cancer. Stage 2. How can someone this young have melanoma? I barely knew what melanoma was. Well, I know now….., and what I do know, I wish I had known years ago so I could have protected my daughter.  

Before her diagnosis, Jillian had been an avid tanning bed user since she was 16. She even worked at a tanning salon and had unlimited tanning time. I didn’t know how deadly tanning beds were. For the next year Jillian had routine checkups every three months. On the year anniversary of her initial diagnosis, Jillian’s doctor ordered a PET scan. There were no symptoms of melanoma, nothing. He just wanted to make sure that things were okay.

We learned then what a sneaky beast melanoma can be.

Just one day before Jillian turned 21, we were told her cancer had spread to her liver, lungs and brain, bringing her to Stage IV melanoma. This began the battle of a lifetime. Not only for Jillian, but for her family and friends.

For the next two years, Jillian endured several surgeries, three stereo- tactic radio surgery’s on her brain tumors, whole brain radiation, a clinical trial, chemotherapy, and the recently approved drugs Zelboraf and Yervoy. Nothing could stop the progression of this disease for her.

But through all of it, Jillian was unbroken. She displayed courage, grace and determination. She had an iron will to live. Her positive attitude never wavered.  Jillian fought against melanoma with everything she had, falling several times, but always standing back up. Always.  I am so proud to have been her mother.

Even though Jillian isn’t here in the flesh today to continue her battle against melanoma, her spirit is alive and well. Through the efforts of AIM at Melanoma, and those who are affected by this horrific disease, we can all stand together in our fight against melanoma.

I know Jillian’s is standing tall right beside us today, and she will be there to celebrate when we do find that cure.

Fall Seven Times, Stand up Eight.

Thank you, Jillian. We will.

Monday, November 4, 2013

Guilty As Charged...

Fall Seven Times, Stand Up Eight.

Jillian’s motto. The word’s I try to honor and live by. The words I use to inspire. But at 4:00 am, those words mean nothing. I’m alone with my thoughts with only my pup allowed to see my mask unveiled. Is it really a mask, or just who I am today? I think it’s both.

Halloween has always been a favorite “holiday” of mine. For years I’ve decorated my house inside and out. Looks like Vegas. The more decorations the better. Tacky? Yeah. Do I care? Nope.

Last year my house was dark. There was no one home to answer the door as I was in Gobels taking care of Jillian.  I drove straight from her place to help Josh and Kaytie as they took their kids trick or treating in their new neighborhood. I didn’t get home until all the goblins had gone to bed.

This year I was home, but I didn’t decorate. Instead, I passed out candy in between packing up Jillian’s room.  I knew it wasn’t going to be easy, in fact I’ve been avoiding it. As I’m packing away all of Jillian’s soccer trophy’s and medals,  it felt as if she was in the room with me. We were sharing stories, singing our hearts out to the Backstreet  Boys as we barreled  down the highway toward some soccer tournament in some state. We were just hanging out. Doing what we’ve always done.

But in the quiet dark of the early morning hours, the reality hits yet again. Jillian is not here. I just packed up her room. And what I felt this morning was guilt. Yes, we can add guilt to my crazy collection of emotions. 

Guilt that I was unable to protect her from melanoma. Guilt that I didn’t know the dangers lurking underneath the glass of those tanning beds. Guilt that I thought her freckles were “cute”. Guilt that the only worry I had from her frequent sunburns was whether she was in pain.

No one needs to fix it for me by telling me I’m not guilty and shouldn’t feel that way.  I’m not going to debate my feelings. I am guilty.

The awareness I’ve tried to share about melanoma has many faces, too. I want to educate. I want to expose the freaking beast. I want to prevent another family from having to pick up the pieces of a shattered life. I want to honor Jillian. But by digging deep, I’ve discovered another reason.  I want to make it up to Jillian by helping to save lives through these efforts. I didn’t save her life. I hope I can help save yours.

“Laying out and tanning beds pretty much screwed me”.
~ Jillian Hayes

I’m still standing, by the way. A little wobbly from time to time, and  plenty of scabs on my knees, but I’m up. It’s 7:00 am now, and the sun will be rising soon. It always does.


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~

Thursday, September 12, 2013

Red Raspberries....

So many thoughts of Jillian this past week. Oh, she is always right there on my mind. Never, ever, but a second away. But this week has been exceptionally emotional. It started Sunday in church.

Each Sunday while in church, my mind goes back to the first Sunday after Jillian’s death. I knew I should probably stay home from church that day,  but I went anyway. It was a week after she died. Immediately as the music began to play, the familiar lump rose in my throat. I could feel my eyes begin to well with tears. If I keep my eyes open and don’t blink, perhaps the tears won’t fall down my face. That didn’t work. Trying to sing around my swelling throat didn’t work either. I submitted to the tears as they silently slid down my cheeks and stood in silence listening to the singing around me. I don’t remember much after that, but sitting down I began to feel the heavy hand of grief as it threatened to suffocate me. I bolted out of church as the sobs had their way with me. I called my son Josh, who had been sitting next to me, begging him to take me home.

So as that memory still lingers each time I go to church, I have control over it. What I don’t have control over is the other memories that pop out of nowhere. This past Sunday I had a flashback to about a year ago.

Jillian started to display symptoms of growing tumors last summer. She was losing feeling in her left side and it was difficult for her to walk without assistance. She had  just completed her first round of chemo.  I slept in the room upstairs across from her room with a monitor so I could hear her if she needed help.

It was 5:00 am when I heard a loud crash and her cry, “Mama!”  I scrambled out of bed to find her wedged on the floor between the bed and the night stand. I have no idea how I mustered the strength to get her out of that tight spot and into bed, but I did.

Jillian rarely complained about her illness and the effects it was having on her body. She was used to having full control over her body. A well-oiled, athletic machine made for playing soccer. To see her cry, and to hear her plea, “Why is this happening to me now?” tore me in half. I gently stroked her face as the sobs subsided and she fell back to sleep.

That was the memory from last Sunday.

Monday the new Billboards were up and running. The Scars of Melanoma. Scar photos of melanoma warriors who are brave enough to share their battle wounds. Not because they relish the exposure,  but dedicated to educate the world that melanoma isn’t pretty.  Real people, real scars. What you don’t see on these billboards are their internal scars of fear and suffering. Those scars aren’t always easy to display.

I-196 .3 Mi E/O Chicago Drive SS/Facing East
M-6 .3 Mi E/O Kalamazoo Avenue SS/Facing West
US-131 950 ft N/O 28th St/Facing North

Wednesday, I received a post card in the mail addressed to Jillian. It was from a local tanning salon wishing Jillian a Happy Birthday and gifting her with free tanning. I realize it was a mass mailing, and unintentional on Tropi Tan’s part, but it was shocking just the same. And I really was okay, until I read the blog post by a fellow melanoma fighter Al Estep, who authors Black is the New Pink-Fight Melanoma. 

I plan to use this postcard as a tool to promote melanoma awareness. It’s upsetting to see how the tanning industry promotes health and good looks to a deadly killing machine.

“Laying out in the sun and tanning beds pretty much screwed me”- Jillian Hayes

Yesterday I was talking with my mom and she relayed a story to me. She had just returned from  my Dads gravesite to visit and to freshen up the flowers. A couple of rows away she spotted an older gentleman standing quietly. You have to know my mom. She makes friends where ever she goes. And if you’re lucky, the next time you meet her, you’ll be greeted with a plate full of cookies. The ultimate caregiver.

As she approached the gentleman, they began to talk. She learned that his wife had died within a week of my dad. They were both creative people, one being a painter, the other a photographer. They traveled the world together, sharing their lives . As they parted, saying  their good byes, the gentleman offered his hand to my mom. One hand contained two red raspberries. With each graveside visit, the gentleman would gently place a raspberry on his wife’s grave, as he partook of his own. Together they would enjoy the memories of their life together, sharing their raspberries.

Yes, the week has been an emotional one, filled with memories. Some are sweeter than others, but I’ll cherish every berry.


Friday, August 23, 2013

Eyes Wide Open...

It’s been almost eight months since Jillian was stolen from her family. While our lives stood still in time, the world continued to pulse and circle around us with its primal force. There is no stopping it. The clerk checking out my purchases at the store asking me how I’m doing today, and if I’ve found everything I need. Feeling the hair on the back of my neck bristle as I mentally clamp my hand over my mouth preventing me from saying, “ No, I’m not doing okay. I just passed the freezer section and almost purchased a box of Snickers bars for Jillian. Only she isn’t here, you see. Please don’t talk to me”.

Jillian’s friends have graduated from college and are preparing to begin their new lives and careers. Jillian doesn't get to do that. Charlotte turned two in July without having her aunt here to give her that big birthday hug and kiss. The summer passes without her. No boat rides, no camping trips, no kayaking. And yet…….

I’ve been thinking back to  the day when I was sitting at U of M while Jillian had her first chemo treatment. That was almost a year ago. Her brain tumors had grown, treatment options were running out. I was instant messaging my friend Staci while I waited for Jillian to return. My hands were shaking, my heart was pounding against my chest, my mouth was dry. I felt as if I would fly out of my skin.

Me: “Where’s my Miracle, Stac?”  Silence.

I knew she was sitting across the state with tears streaming down her face, thinking about how she could comfort me. It took quite a while before she replied, “Jillian IS your Miracle, Sue”.  

Staci’s words mean more to me today than they did that day in the waiting room. Jillian IS my Miracle. Because of Jillian, I’m learning grace. She is teaching me how to be strong, when I have no strength. She has given me laughter through the tears,  and an open eye to the Miracles I experience each day.

Slowly, we are healing. Oh, there are many times when the Mama Bear in me rears its ugly head. Times when I want to scream in agony from the raw pain that Jillian’s death has inflicted upon my soul. But we ARE healing. I’m finding joy again, and I’m learning to find good in an incredibly tragic situation.

We live in a broken world and tragedy strikes without warning. We aren’t promised a long life. We aren’t promised a life without pain or strife. And frankly, we don’t deserve one thing. The thing we are promised is that God is with us in the best of times, and He shines in the worst of times.

The miracles are there, ya know. They’ve shown themselves to me over and over. And this is only the beginning. Our world may be broken, but it is our world, and oh so beautiful. 

 Where is your Miracle? Look for it. I’ll bet it’s right there, just
waiting for you to grab hold.