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

Just....Thank-you

I’ve always been a private person, believe it or not. I have never liked being the center of attention, I was horrified if I had to speak in front of a group of people. I would stutter, stumble, and forget the words. There were few friends, and probably only my mother, who knew what was really going on within the depths of my soul when things were opposing in my life.

When Jillian was diagnosed with Stage IV melanoma, I began a care page for her. It was easier for me to update her progress  through this avenue rather than email and phone calls. I tried to keep the care page focused on her treatments without talking about what it was like for me and our family as we traveled this road with her. I was careful  with the care page, because I knew she read every word. Jillian was very similar in her need for privacy.

There are many reasons why I began this blog, but the main reason was because I wanted to let others know what it was like to be a caregiver to a person dealing with cancer, and to spread awareness to this devastating disease. Being open and honest about this journey hasn’t always been easy. Even today, when I start to write, I brace myself and push through the fear of being exposed. Just one of the ways that Melanoma Cancer has changed me as a person.

Tuesday, I got an email notifying me that I was one of the 10 top Skin Cancer bloggers. I was shocked.

"Officially known as "Social HealthMakers," these bloggers are among the most influential people in health and wellness on the Web, according to a ranking system based on more than 100 individual metrics". 

Here is the official press release from Market Watch:

 http://www.marketwatch.com/story/sharecare-names-top-10-skin-cancer-bloggers-2013-07-09

I share this honor with several of the melanoma friends I’ve met along the way, including Chelsea Price and Katie Wilkes.

http://www.sharecare.com/static/top-ten-social-healthmakers

Never in a million years would I have expected that so many people are reading Jillian’s story. There are days when I have a hard time getting out there, sharing my heart and experiences with this disease and beyond. When I see that people are listening and that perhaps I’ve touched or helped someone along the way, it puts my own struggles to be open and honest about our rollercoaster smack dab in the back seat. Right where they belong. God’s got it covered. He always has. Always will.

Thank you to all of you who read my blog. Thank you for helping to share awareness to melanoma cancer.

Just... thank-you.

~Peace

Questions and Answers....

Last night I went to see the latest billboard we have up in Grand Rapids, Michigan. This one shows photos of several Melanoma Warriors who are no longer here on Earth, sharing their lives with their loved ones. The very first billboard we had after Jillian died was an extremely emotional time for me. I’ve posted about it already, (The Chain Link Fence), so I won’t elaborate. 

Although I’m grateful we are able to spread awareness to this horrific disease with these billboards, seeing my daughters face all lit up for the world to see is still a punch in the gut. It should come as no surprise to me that I’m feeling a little lost today. That’s okay. I’m getting used to these “off” days, and I’m embracing the emotions.

I was going through Jillian’s room the other day and ran across a Poem Book she had written. She was fourteen at the time. It was a school assignment where the student had several topics they were required to write about. The poems were then bound into a book. I remember reading the poems after her book was “published”. I read them now, and they hold a whole different meaning for me. I realize that poetry is all interpretation, but the thoughts are coming from somewhere.

  

Through my reflections today, I was reminded of a time when Jonathan was around 13. We were at a church event. I can’t remember exactly what it was for, but it was just the two of us ,mother/son. The host of the event engaged the group in some games. This particular game was aimed at the parents in an effort to see how well we knew our child. Both Jonathan and I were handed a piece of paper. The leader asked us several questions about our child:

What is your child’s favorite meal? What is his favorite color? Who is his favorite musical artist? What is his favorite sport and so on…..We all wrote down our answers to the questions and then compared them with each other. Damn. I failed after the first question. I looked at Jonathan, and he rolled his eyes at me saying, “You KNOW my favorite meal is steak”.

I should have known this. How could I NOT know? We live together, we talk with one another, we share meals. What an eye opener that evening was for me. It is so easy to become involved with the day to day tasks of living, that we don’t take the time to really know our children. Slow down, life! This is such an important, yet fleeting time in our lives when our children are little. Once it’s passed, there is no getting it back.

This brings me to one particular poem Jillian wrote. I wish today I could ask her what she was thinking when she wrote these words. I can’t.  But one thing I do know without doubt or interpretation, is that Jillian was strong as a child, and strong as a young woman. I’m just beginning to understand the depth of her strength and courage.

Peace~

The "D" Word....

Summer has almost officially arrived. Kids are winding down with school. People are making their summer vacation plans. Summertime, a time for fun, and making memories with family and friends. I look back on the summer of 2009. The kids had just returned home from Georgia after visiting with their uncle. The mole on Jillian’s back had been bleeding and needed to be looked at. She was nineteen at the time. Cancer was the furthest from our minds that summer. No one could have  prepared us for the words, “It’s melanoma. Cancer”.  It wasn’t until the next year when we realized just exactly what we were dealing with after we were told her cancer had spread to her liver, lungs and brain.

 I’ve written about Jillian’s journey since that stage IV diagnosis. What I haven’t touched upon is the word Death.

We live in a society today where people talk about issues fairly openly. So why is the word” Death” so difficult to talk about with those who have been diagnosed with cancer?  It’s the White Elephant’s twin sister in the room.

For family members, or caregivers, perhaps it’s hard to bring up the subject because we don’t want to appear less than hopeful. As if our words would bring images or thoughts that the cancer patient hasn’t  already been thinking about. Every. Single. Day. Or it could be that the person who has been given the cancer diagnosis isn’t ready to say the words. If they say them out loud it becomes more real. Or maybe it’s because they don’t want to worry those that love them by speaking what is truly lurking in their hearts.

We aren’t prepared for talking about death with our loved one any more than we’re prepared to talk about cancer. It’s painful, frightening, and unknown, so we avoid the subject.  But the reality is that each of us are going to die someday. We push off the “someday” to the very depths of our minds to deal with at another time.

I wasn’t prepared to talk about death any more than the next person. When my dad was on Hospice care last August, we spent a lot of time together just talking. He didn’t want to die. He told me that he didn’t want to leave us. What a normal reaction when living here on Earth is all you’ve ever known. It felt uncomfortable for me to hear those words when I knew he wasn’t going to be here long. It weighed heavily on my heart and I prayed about it often.

I’ve read that the process of dying is different for everyone, but if there is unfinished business, if they are afraid, or if they don’t want to leave their family, the transition can be more difficult. I think this was true for my dad, as he struggled the last few days of his life. He didn’t want to leave us.

On the Sunday before my Dad died I was driving to the Hospice facility when God told me to talk to my Dad. I didn’t know what I was supposed to say, but I prayed for the right words. And they came. I asked my Dad to promise me that he would be there waiting for Jillian when she died, and to give her a big hug from her mama. He looked at me and slowly nodded his head yes. This was a father making a promise to his daughter. He had a job to do, and he was at peace with it. He died peacefully two days later, holding my son, Joshua’s, hand. I’m so thankful we had our talk.

My Dad was a strong man, both physically and emotionally.  He taught me many things growing up, but  I’ll be forever grateful for the magnificent gift my Dad gave me through his own death. He made it possible for me to talk to Jillian openly when she was home on Hospice care. I was able to tell her about the promise her Grandpa made, and that he was waiting for her. I told her how proud I was of her, and how much we were going to miss her.  I was able to reassure her that I was going to be okay when she was gone, and that our family would take care of one another. I’m just beginning to understand the true value of my Dads last gift to me.

Now that the Twin White Elephants are no longer in the room, I can honestly say that those intruders are only as large as we allow them to be. Have those talks, even if they are difficult. There are words that need to be spoken. There may not be a second chance.You have the rest of your life to either live with regrets, or to be able to say, “Well done”.

~Peace

The Rock Garden...

Memorial Day weekend was spent working in my yard. All weekend. And I’m not complaining one bit, because I was in my “happy place”, my “woodshed”. Spreading bark, moving perennials, planting flowers and pulling weeds isn’t really work for me. Not in the physical sense anyway. The work I do in my yard , is the emotional work needed to tend to my heart. When the kids were little, it was a great way for me to find some time alone. Funny how everyone scurries when there is yard work involved.

I spent a lot of time talking with God, with Jillian, and my Dad this weekend. We were talking about past Memorial Day weekends.  I can remember all four kids jammed into my Ford Explorer, along with the dog and cat and whatever stray animal we may have had that summer. Could have been the bunny, or the Robin. Each entity was fighting for space between pots after pots of Hosta plants, as we drove the hour and a half up North to our cottage. It wouldn’t be unusual for me to be driving down M-37 and have the cat land on my lap. The kids wanted to hold her during the drive, but all bets were off when Cleo started heaving.  I’d hear her retching, and brace myself for the landing as she sailed over the seat to my lap. I’d pull over, clean myself off, and we’d continue on our way. I got smart after the first incident, and drove with a towel on my lap. 

It was like this every weekend. Pack up, run to the greenhouse, drive, heaving cat, drive. The kids couldn’t wait to play in the lake, I couldn’t wait to play in my yard.

I look back on those magical Memorial Day weekends at the cottage, and it almost feels like those memories happened to someone else. And they did, because I am not the same person. My children are not the same people. Our family is not the same family, where we were once innocent and unaware.

As I’m chatting away with my Trio this weekend, random thoughts zip through my brain and it happens so fast, I can’t keep them all straight. It usually takes a day or two before the seeds of thought begin to grow where I can recognize what I’m supposed to take away from these exchanges.

The weeds in my back yard were plentiful. As I’m  pulling them out , I’m noticing how much harder they are to pull out of the stone, rather than the bark. Okay, I get that one. My faith is the rock and that rock will help me weather the tough times. The Rock keeps me grounded as I blindly weave through this new path I’ve found myself on.  

After I wrote the last few paragraphs last night, the words just stopped. I’ve had this before when the words wouldn’t flow, when I’m stuck. I shut off my computer and went to bed, praying that whatever it was God wanted to teach me would come to me in the morning.

I’ve been reading about grief and stress.

I’ve found that the following life events are the top stressors.

• Death of a family member
• Terminal illness (one's own or a family member)

Physical incapacitation, chronic pain, or chronic illness

Drug or alcohol abuse (self)

Drug or alcohol abuse (family member, partner)

• Divorce

Marriage

Loss of job or job change

• Moving house

Change of school (primarily for children or teens, but this can effect adults, too)

Grief: The loss of a child is generally considered the worst possible grief, making it one of the leading causes of prolonged grief. In the natural order of life, children are supposed to outlive their parents.

"The death of a child is like no other, "says clinical social worker and grief counselor at the Children's Hospital and Clinics, Minneapolis, Minn., Theresa Huntley, in her book "When Your Child Dies".
Your life has been irrevocably changed. Life is different. You are different". 

Parents universally say that when their child dies, a part of them dies. A child is a symbol of the future and losing that child represents a loss of hopes and dreams. While the experience of pain and loss is universal, transcending culture and class, the grieving process is still a very individual and personal experience. There is no right or wrong way, nor is there a timeframe. It is a lifelong process that involves absorbing the death and memories of the deceased into a new life.

 For the many who are dealing with stressors and grief, have patience with where you are in your grieving process and don’t expect anything from yourself. Forget preconceived notions about what grief should look like or how long it should last.

So how does all this fit into where I am today? I’m dealing with several of the top stressors, and I’ve lost my child. For the most part, I’m doing okay. There are days when Jillian sneaks up on me and punches me in the heart. It can come out of nowhere. I’ll be looking at a photo of her on my desk and I’m sucked into the darkness with the knowledge that this beautiful, vibrant, courageous, young person is no longer here on this Earth. Just gone. It’s hard for me to wrap my arms around that fact. I know she is in Heaven, I know she is with my Dad. But do I feel that? Sometimes I do, some days it just feels empty.

I am tying that empty feeling to the weeds in my garden. Even though I’m rooted in the Rock, the weeds can still be pulled out sometimes. I’m a crabby mama bear slipping into the habit of doing things on my own. I should know better.

I’m thankful for the conversations I had this past weekend with my Trio, and the opportunity to tend to my garden. Next time I’ll be armed with Round Up and landscape fabric.

~ Peace