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.

~Peace

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~

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.

Peace~

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.

~Peace

 

Let's Talk About Love....

Jillian’s Journey with Melanoma- A Mother’s Story.

The journey continues as the road twists and turns. It can be staggeringly dark as I try and find my way. There are hidden dangers along the way. Potholes that leave me breathless if I peer into their depths too long. Little side trails that leave me lost and confused. But I’m learning how stay on the path, face the demons, and kick them to the curb as I continue toward the light. And there is always light we can reach for. We just need to keep our eyes open to it.

On Saturday, July 20,  Tim VanderMolen was stolen from his family by Melanoma Cancer. Another young person with a future, a man stolen from his  young son and loving family. Another family forced down the cancer road and into a new state of existence they didn’t ask for. I became friends with Tim and his sister Becki through his cancer battle. Last November, I had a billboard up at the AIM walk in North Carolina honoring our Stage IV warriors. Tim asked if he could be on the billboard, but unfortunately the billboard was already complete and up and running. I made a promise that he could be on the next billboard. Today from July 29- August 25 , Tim’s billboard will be on display in Grand Rapids, MI on I-196 .3 E/O Chicago Drive SS/Facing East.

The billboard campaign has become successful in spreading awareness to this disease, and as I drove home from dropping the check to the billboard company today,  I was struck with the realization that these billboards and spreading awareness has become so much more. It’s about people. Real people who are struggling each day, each minute with this disease. It about families who are devastated and ripped open when someone they love dies from Melanoma. It’s about fear. Fear of the unknown. Fear of upcoming scans, fear of their melanoma rearing its ugly head after being classified as “No Evidence of Disease”. It’s about honoring the magnificent human beings that are effected by melanoma, and how we can help by sharing  and teaching others.

 It's also about love, you know. I’ve grown to love these warriors.  We are all connected in some way just by breathing on the same planet at the same time. Let’s not only talk about love, let’s do something. Give that hug. Make that call. Help those suffering to see the glimpse of light they are searching for.

~ Peace, and love!

Tim set up a page to help offset some of his funeral expenses. I've attached that link:

http://www.gofundme.com/1u0ns4

Pet Peeves...

 

Believe me, I am no expert when it comes to this grieving thing. Unwanted, uncharted territory is what this is. Since the day that I became a member of the Cancer Club, I have come in contact with many people who have experienced the loss of a loved one. Far too many. But it’s the world I live in now. It’s my world, and at every turn and in every corner, there it is. I cannot escape it. I am learning to live around the hole that resides in my heart. Without falling in. It takes work, and moving through the muck isn’t easy.

I’ve lost my innocence. I see couples with their young children playing together in the park. My mind goes back to the day when I was pushing my babies on that swing. Thoughts of melanoma, the sun, scans and treatments had never entered my mind in those days. Blissful innocence.

I remember having a conversation with my mom when Jillian was first diagnosed with stage IV melanoma. I told her that I didn’t think I could go on if Jillian died. My children have always been my priority, and I was convinced that I just wouldn’t make it if something happened to one of them. And I’ll be completely honest here. There have been days when I could care less if I took another breath. The pain can be so deep, too raw to care. It wasn’t that I didn’t love my other children, I do. But when a child dies, a piece of your heart has been ripped out. That hurts! You are left with a huge hole, a void that is unexplainable unless you’ve gone through the tragedy yourself. I probably wouldn’t have had the courage to disclose those particular feelings except that I recently read an article about some common grief reactions and I know I’m not alone. I haven’t experienced all of these reactions, but I’ve experienced several of them.

Grief reactions following the death of a child are similar to those following other losses, but are often more intense and last longer. Parents commonly experience the following grief reactions:

• Intense shock, confusion, disbelief, and denial even if the child's death was expected.
• Overwhelming sadness and despair, such that facing daily tasks or even getting out of bed can seem impossible.
• Extreme guilt. Some parents will feel they have failed in their role as their child's protector and will dwell on what they could have done differently.
• Intense anger and feelings of bitterness and unfairness at a life left unfulfilled.
• Fear or dread of being alone and overprotecting their surviving children.
• Feelings of resentment toward parents with healthy children.
• Feeling that life has no meaning and wishing to be released from the pain or to join the deceased child.
• Questioning or loss of faith or spiritual beliefs. Assumptions about the world and how things should be do not fit with the reality of a child's death.
• Dreaming about the child or feeling the child's presence nearby.
• Feeling intense loneliness and isolation, even with other people. Parents often feel that the magnitude of their loss separates them from others and that no one can truly understand how they feel.

 *********************************************************

I understand that approaching a person who has recently lost a loved one can be difficult. People are afraid. They are concerned they will say the wrong thing. Maybe they are afraid of your tears, and try to avoid the subject.

I was in the grocery store and I bumped into a soccer mom that I hadn't seen in a couple of years. Her daughter played with Jillian years prior, and they had been good friends. I could actually see the discomfort in her face as we approached one another.

Soccer Mom: "Hi! How are you"? 

Me: "I'm doing okay. How are you"?

Soccer mom went on to explain what had been going on in her life and what her children were up to. The white elephant was definitely in the room right then. Oh boy.

Me: "You've heard that Jillian died haven't you"? ( a real conversation stopper)

I could have hugged her right then. I could see the relief in her eyes as the subject of Jillian's death was brought up. We talked and we cried, but we both parted ways feeling a connection, each of us having learned a lesson as we went on to our lives beyond the produce aisle. 

I wanted to write this post in the hopes that it may help to understand what to say and what not to say when you are struggling to help someone through these dark days. I know people have good intentions, and the waters are just as murky for those that haven't experienced this loss. Below is a list of my personal Pet Peeves.

PET PEEVES

1. Jillian lost her battle with melanoma cancer. ( NO. She didn't lose. She fought hard, and she won. No one loses their battle with cancer)
2. At least she is no longer suffering. (As far as I'm concerned, there is no, "At Least")
3. She is in a better place. (Right. I know that. I want her here with me)
4. Some day you will move on.( No, I won't. I'll move forward. "Moving on", in my mind means getting over something)
5. God had a reason for giving Jillian melanoma. ( We live in a broken world. God didn't "give" melanoma to Jillian)
6. You have my Christian sympathy. (Um..thank-you, but does that make a non-Christian's sympathy any less comforting?)
7. I look forward to the day when you can learn to accept this. ( I'll NEVER accept this. I will learn to live with it)
8. Jillian earned her angel wings. (I'm not sure why this bugs me, it just does)
9. We haven't called because we are trying to be sensitive to your grieving. (Call. I love to talk about Jillian. I'll try and make you more comfortable)

I know many won't have the same things on their list of Pet Peeves, and that's okay. These are just some of mine. I encourage you to add to the list by posting a comment, or sending me a message. I'll update the blog post if I get any response. 

If there is still doubt when you approach that person in the produce aisle, just tell them that you are thinking about them and their loved one. Give a hug. That's all that's needed anyway.

~Peace

ADDITIONS TO THE LIST

10. She's in a better place now. (Sorry, but I think her place is here with the family and friends that adored her).

11. She was so brave and strong. (Well yeah, but that didn't change the outcome did it?)

12. So you are doing better now that it's been awhile, right" ( No words for this huge blunder)

13. When you walk into a room, and someone sees you and they go,"Awwwww".

14. We didn't want you to feel worse, so we say nothing. ( Saying nothing is almost as bad as saying the wrong thing. Remember, I want to talk about my loved one.)

15,  For my son and his wife the grief of losing their baby during labor has been all consuming. I was talking with someone about how helpless I felt...How I wished I could make it better for them. The reply I received was, "Better that it happened before they got to know her" ( just wow)

16. God never gives you more than you can handle. ( This is false. Bad things happen to good people, again because we live in a broken, sinful world. He does not promise this. His promise is to be with us throughout our trials.)

Hush...

Expectations. How many times do we feel our expectation’s aren’t being met? Or, how often do we allow other’s to put their expectations upon us? It can be the expectation that you should move forward in your life after your child has died.

Really? Have you lost a child? No, I’m not talking about a husband, a wife or a sister or brother. I’m talking about a child. No? Then please hush. 

Or perhaps someone is telling you that you aren’t getting out enough, or you’re getting out too much. Spending too much time, or not enough time on one thing or another. Seriously, unless you’ve traveled the same road in the exact same way, hush.

There is no time table with grief, and there is no right or wrong way. This is a good lesson to learn.

I’ve spent the majority of my life trying to live up to others expectations. It’s no one’s fault but my own. But I’ve learned that I’ll never be exactly what someone needs me to be. For them. I end up being the hamster in the cage spinning on its wheel, getting nowhere fast. I’ve slowed down a lot the last few years. The wheel resides in the closet now, and I’m strong enough to fight for what I feel is right for me. I don’t own the expectations, they do. 

So if I don’t want the burden of an expectation, I need to understand that I shouldn't expect anything either. My good friend Staci and I have talked about his subject many times. We are all individuals, and I believe most people are basically good people, with good intentions.  So what happens when…..

The sun. The life giving, life taking sun. I see young families on the beach with their children and it’s plain to see they’ve been exposed to those deadly UV rays far too long. Why? They know about Jillian. They know she died from spending too much time laying out in the sun and using tanning beds. So why? I have no clue. But instead of  hauling out the hamster wheel expecting something different, I’ll keep doing what I’m doing in the hopes that one day it will click. One day before they can expect a visit from PunkEvil, Melanoma.

I leave you with Jillian’s words:

“Laying out in the sun and tanning beds pretty much screwed me”.

~Peace