Tuesday, September 16, 2014

Enter at Your Own Risk....

Fall has always been my favorite time of year. I love the cooler weather, the crisp air. I love to see the clouds heavy and low in the sky. I love the feel of the balmy breeze as it carries the scent of burning leaves. And I love Halloween.

But with Fall comes memories of the past few years. My dad died two years ago. Jillian’s birthday is coming up. Memories of seizures and sirens.

I had dinner with my mom last night. We were talking about grief, and how grieving is different for each person. We touched on how people, even family members, deal with someone who has suffered the loss of a loved one. “They don’t know what to say”. Or, “They don’t want to make you cry”. Or maybe, “They don’t want to say the wrong thing, so they say nothing”.  

I don’t know. I don’t get it. I don’t understand how the topic of death is so difficult. It’s a part of living, and we will all experience it. All of us are going to die someday. It’s the one certain thing in living. So, why aren’t we living our lives reaching out and caring for those that experience death and grief when it does strike? Why aren’t we learning more about the grieving process? Why do we put so many expectations on those who are actively grieving to move on, get over it, to act in a certain way. I think it’s cruel, selfish, and it makes me angry. And if it makes me angry, how many other people are struggling?  It takes a village, right?

There are many groups out there to support those who have lost a loved one. I think there should be more support groups dedicated to help people understand the grieving process. A group focused on helping the supporter of the griever as they navigate through the wild storms of grief. The sea of emotions, and the uncertainty of “what next”.  Friends and Family. Classes mandatory in high school. Family living, family dying. This topic isn’t going away.


And then…just like that, my thoughts head in another direction. I picture myself on a hard, cold examination table covered in white paper. I hear the doctor’s footsteps stop before my door. I hear the rustle of the clipboard as the doctor removes it from the wall, flipping pages as he reads over the findings. He walks in and sits down on the chair beside me. With a grave expression, he looks into my eyes. “I’m sorry, Susan. The diagnosis is conclusive. You have Grief”.

You have Cancer.
You have Grief.

OH! I have Grief! That explains it. The mumble, jumble, messed up tangle of emotions. The lack of focus and forgetfulness. The laughter, the tears. And that stupid, silly mask sitting on my bedside table waiting to be strapped on as I begin another day. So, it’s okay that Grief is all encompassing in its intensity. That it has several unusual symptoms, and there is no cure. Now I know what I’m dealing with.

It has a name.

It’s real. It isn’t this elusive “thing” or emotion. It has real physical symptoms, and it effects the entire person. For a loooooooong time. To say I’m not disappointed in the lack of knowledge or awareness surrounding this subject would be a lie. I’m strong, yes. But I still hurt. And if by my peeling this grief thing off one bloody layer at a time, exposing it for what it is in the hopes that it touches someone along the way, well, good. I’ll get back to stomping on melanoma soon enough. Right now, I’ve got my own work to do.

If Grief had a ribbon, it would be the color of the rainbow, signifying HOPE. Hope as we move from mourning to Joy.

Because even in grief there is hope. We are Grief Warriors. Bad Ass Grief Warriors.

~embracing crabby

Monday, July 28, 2014

And the Journey Continues.....


Two weeks ago our pastor talked about the quote from Mary Oliver- “Tell me, what is it you plan to do with your one wild and precious life?” He mentioned it again yesterday. Thanks a lot. I can’t get that quote out of my mind. It keeps whispering to me, poking me, prodding me.

Well, I can say one thing I’ve learned with certainty. There are no plans. Goals, perhaps. The grieving mind is a slippery thing these days. I’m trying to figure that out too.

I was at an outdoor concert a couple of weeks ago, listening to blues music. The park was filled with people, young and old. As I sat watching the crowd, I see these individuals and realize they all have their “stuff”. Each one of them are living a life that extends to friends and family members. Well beyond what I can see. They too, could be grieving. Or sick. Maybe they just lost their job, or their home. Maybe their child is serving overseas. Maybe they are working through a divorce. Something. Anything.

I smile as I watch a young mother chasing her toddler as he runs back and forth across the grass. She patiently picks him up, plunks him down, and goes through the same exercise again and again. Exhausting for her, I’m sure. A young boy, full of energy. He reminds me of my own son, always in motion. What will he become?

 I watched the young girl to the right of me. She was about four years old, playing under the trees, surrounded by blooming Hosta’s. The stalks of flowers were taller than she was. This little mite had two sticks in her hands, keeping beat to the music with her imaginary drum set. She played the rock for over an hour, lost in herself.

That scene brought me back to my own childhood. I must have been close to the same age as the girl with the drum set. My grandmother had a back yard full of trees and wild blooming things. Ivy was everywhere, giving this small yard a jungle like appearance. As I gazed upward into the trees, I watched their leaves blowing and waving furiously. I could hear them whisper. To me. My aunt was leading me through the jungle, holding my hand. “ Do you see those leaves, Suzie? They are smiling and waving at you, telling you that they love you”. I believed her. And I never forgot that day.

What were the Hosta’s telling the precious young drummer girl? I hope she was filled with wonder and the promise of all things possible.

 I pray that I can continue to look at my one wild and precious life with open eyes, filled with wonder and awe. And to know that I’m not lost, like a ship in the night. But that I’m on my way.

 Love and peace~


Tuesday, July 1, 2014

Twelve Steps in Helping...

Spending time in my yard has always been one of my favorite things. It’s my time to reflect and to problem solve. My weekend was spent doing just that. It was refreshing and healing. Just what I needed.
As I’m drinking my early morning coffee preparing for Monday and my week, I’m already tired. I get frustrated with myself when I have to work so hard to muster up the energy needed to be what I want to be. For me, and for everyone else. Tears roll down my cheeks and I think, “Oh, Great. Here we go again”. Grasping for my will and resolve, I think about Fear. I’m afraid. I try and push through it, but I’m afraid of my own weakness and vulnerability. People think I’m strong, I’m not.

With those thoughts, I began to read about grieving the loss of a child, just to reassure myself that I’m not being too hard on myself. I ran across the below article by Wiki. I have added my own thoughts in italics. My wish is to help others that are in a similar situation to feel better about themselves, and to know they are not alone.

Twelve Ways to Help a Grieving Parent

Remember that your help or support will be needed long term: It is going to take time.
As in long term, it may be a lifetime of support.

There will be false starts and setbacks: Be prepared for the emotional ups and downs with them. Your love and compassion is just what they need.   
Each day I wake up knowing this is a new day. I can be assaulted with sadness with no warning, and at any time. I was talking with my new neighbor the other day, and out of nowhere my throat tightened, and tears slipped down my face. It was difficult to feel so vulnerable. Ugh.

Start by attending the funeral and any memorial service: It doesn’t matter what you need to cancel to be there. Making the effort to attend means a lot to the parents and shows them how much you care about their lost child, and that you are counted among those who intend to remember and aid the family in their time of loss. 
I spend time going through Jillian’s guestbook. I’m thankful for those that attended her visitation and service. I remember.

Be Practical: Grieving parents need space to grieve. You can help this by providing meals, offering to keep the garden tidy, cleaning the house, or running errands for them. Do the everyday mundane things that suddenly seem pointless to them. Stay in close contact; simply calling and visiting can be a huge source of practical support. 
Keeping things in order takes extreme effort, even now. Be gentle when I don’t feel like joining in on the fun. Fact is, I’m not superman/woman.

Do some research on the grieving process: Go online and read about what parents feel when they lose a child. Jump into forums and talk to other people about their feelings and the things that helped them through during the initial stages of their grief. Sites such as Compassionate Friends can be a good place to start.         Good advice. That way you’ll know, and spare me having to try and explain myself. Because more than likely, I won’t.

Expect the grief to increase not decrease. This is grief for life, even if one day it is becoming the perennial missing- part- of –the- heart type grief; it’s not something to “Get Over”. Accept that there is no time frame on grief. For now, it will continue to grow in magnitude and you are much needed as the grief overwhelms your friend or family member.
Be a shoulder to cry on, someone who will listen, someone who will not judge, and someone who will keep being there, no matter what. Accept that a bereaved parent will never, ever get over the loss of their child, but know in time, lots of time, they will get through it. 

Don’t ever tell the parent to “Get over it”, or “Get on with your life, your child would want you to.”
Never Say “You can always have more children”, if the parent is mourning the death of a baby or very young child. This is one of the most   insensitive things to say to a grieving parent. And grandchildren are no substitutes for lost adult children either; just don’t go down this avenue of platitudes.

One really good phrase is simply: “Tell me how you feel”. This lets the parent open up and talk in any direction wished. And to cry or scream if they want to as well.
 I’ll never “Get over it”. I learn to live with it. You may not want to hear that. That isn’t my issue.

Don’t try to mend things and don’t try to counsel or advise. Unless you’re professionally trained to handle grief, leave this part to the professionals. Your role is as someone who cares, listens, and respects the grieving parent. If you’re inclined to offer religious or personally based advice, be one hundred percent sure that it’s welcome.
Allow the parent to talk about their child.
Allow the parent to cry, scream, sob, and be angry. Simply allow them to feel all of their feelings. It’s their right.
If you don’t know what to say, say nothing, just listen. Saying nothing is better than saying something like, “He is in a better place”, He is with God now”, etc. If you feel better saying something, simply explain that you don’t know what to say if that’s what you’re feeling. It’s better to be honest than to bumble along and potentially make things worse.
Don’t force or overly encourage the parent to socialize, or return to work.
Never put them down or discourage them from seeking support online with other bereaved parents.
 When people say to me, “I don’t know what to say”, I smile. Of course you don’t. I don’t expect you to know. And it wouldn’t matter anyway. There are no words that will make it any different than it is. Just knowing you care is enough.

Never compare a child’s death with a non-child death of your own you’ve experienced: The loss of a child carries very different connotations from the loss of a parent, sibling, or friend. Parents will often tell you that they wish it could have been them instead of the child and this is a feeling that haunts them for many years. The pain after the loss of a child does differ from any other loss of a person you know and love; accept this and acknowledge it where needed.
Share your pain over the loss of their child, but remember your pain is nowhere near their pain unless you have lost a child yourself. There is no greater pain than the death of one’s child.
Never tell a bereaved parent you know how they feel or you understand because you probably do not.
Don’t compare the loss of your job, marriage, pet or grandparent to the loss of their child. 
This just shuts me down.

Don’t be afraid to talk about the child: Every parent wants to know their child is not forgotten. And listen to the parents when they want to talk about their child. Whether the child was young, or an adult, there will be many memories that the parents will want to talk about, as a way of bringing the child back into temporary existence.
If you talk about their child and they cry, it’s okay. Allow them their tears, and know that you didn’t hurt them.        
Jillian is one of my children. I love talking about my kids.

Don’t just disappear: This can be the ultimate letdown for a grieving parent, to lose someone who was once a friend, a rock. The concern you feel at not knowing what to say or do is nothing compared to the pain, sadness and loneliness the grieving parent experiences. It’s better to put your foot inot it and apologize than to just fade away and cease to be a resource your friend can count on.
Remember the parent on Mother’s Day and Father’s Day, they are still a parent.
Remember the child’s birthday. Send a card saying that you remember their child.
Remember the child’s date of death. Send a think of you card, call them, share good memories about their child, and listen.
Enough said.

Give them space: As well as letting them know you’re there for them, also accept that the bereaved parent may want to seclude themselves. Be wise to signals of distress about having you around and gently withdraw, still letting them know that you’re there for them whenever they need you, just a call or text away.
It's complicated. The kindest thing you can do it to be gentle and not to have any expectations.

 Peace~



Thursday, June 5, 2014

Slow Down.....


It’s been a long, hard winter. Finally spring is here and on a fast track toward summer. The sun is shining, flowers are blooming. Nature has been busy. Life becomes busy.

As I sit with my morning coffee, I reflect on where I’ve been, and where I’m going. I’m happy that our family is moving forward little by little. But then I ask myself the question, am I really moving “forward”, or am I just moving? 

We lost another young man to Melanoma on Tuesday. Matt was the same age as my oldest son. It’s difficult for me to hear the stories of people fighting so hard against this disease. It hurts me when I hear someone else has died because of it.

Do I hide from the pain, cover my ears, close my eyes? Should I just avoid it? I could, I suppose. And those questions lead me to yet another. Why would I? For whose benefit?

 And that drops me smack dab ( where did that phrase come from?)  into the questions I’ve been skirting around for a while now. Why are we here, and what do we do with our time here on Earth?


As I move sideways, Matt's family has come to a screeching halt. While families are planning vacations, there is someone not far planning a funeral. We have one shot at this life.

I believe we are here to serve one another. To help. Make that phone call to the friend who is in an ongoing battle with cancer. Drop a note to the person whose life has taken an unexpected turn. The one who is going through a divorce. The person who just lost their job. The one who buried a loved one. They need you.

~Peace


Saturday, May 31, 2014

Unlikely Events...

There are many events in our lives that hold importance. Christmas, birthdays, Mother’s Day.....

May is Melanoma Awareness Month. An event. Our melanoma community has been busy blasting social media with stories of warriors, information on skin safety, new advancements in research and more. I see it fitting that I close out this month with Jillian.

You’ve heard the story. A story of a young girl, still in her teens loving life, and enjoying summer. One pesky mole on her back that just needed to be cut out. Melanoma? What’s that? That mole led up to several events in our family, and it ended Jillian’s life.


I’ve heard the comments, “ She’s too young. It just isn’t fair. Why”? I’m not questioning “why”. I’m not shaking my fist at God, asking Him how he could allow this could happen to such a vibrant young girl. I have questions about what the greater meaning of life is, however. And as we limp along this new road without Jillian, I’ll keep my eyes open looking for answers and opportunities to make it better.

In the meantime, events like Melanoma Awareness Month will be acknowledged. And if just one life is saved through sharing Jillian’s story, I’m okay with that. Well, sort of. J

Next week, in honor of our beloved Jillian, this billboard will be displayed in Grand Rapids, Michigan.


“Laying out and tanning beds, pretty much screwed me”- Jillian Hayes

~Peace

Saturday, May 3, 2014

Changing Colors...

So here we are again. May, Melanoma Awareness Month. I marvel at how life moves forward, pulling us along with the current even as we sputter and splash our way through. Some days we feel as if we are drowning as the tenacles of despair fight to pull us down into the dark abyss. Other days we are blessed with glimpses of brilliant light just beyond the banks. Like the reach of a child, bathed in sweet smiles, waiting with open arms.

Life has changed drastically for our family this past year. We are learning to live our life without Jillian. I’m learning to live with the images of her last year on earth. Those memories are becoming less horrific for me, and  are slowly being replaced with her true essence.

I’ve lived through the death of my dad, and an untimely divorce. I moved from my home, my place of solitude. I’m beginning a year of new memories.

And it’s good! I’m learning to view my life as a huge, evolving canvas. I’m not the artist, God is. But I get to choose the colors. I prefer the bright colors of spring, rather than the greys of winter. I know there will be dark hues on my pallet, but they’ll be mixed with pastels, giving the artwork more depth.

One thing hasn’t changed. My passion for awareness and education to Melanoma. The black of this disease is the frame to my canvas. But I’m stepping through, and appreciating my Makers hand, as he paints a marvelous masterpiece for me and my family.

I’ve been blessed to have met so many beautiful people throughout my journey. The next billboard is focusing on our Caregivers. The people behind the scenes. The other half to melanoma. The ones with broken hearts learning to live with their own cancer diagnosis, but in a different way.

The below billboard will be displayed in Grand Rapids Michigan. That’s FOUR  separate locations. How’s that for getting LOUD?

*May 5- June 1
I-I96 .3 mi E/O Chicago Drive SS/Facing E.

*June 2-June 29
US-131 .5 mi S/O West River Drive WS/Facing S
*Two Bonus Locations yest to be determined
May 5-June 29

My prayer is two-fold. Learn all you can about Melanoma, tanning beds and the sun. If you have just a tiny tickler of doubt, do your research. Educate yourselves. And then share what you've learned.

You may just avoid having to live with the Black on your own canvas.
~Peace and so much love...










Thursday, March 27, 2014

Taking Time....

After many prayers, much thought and consideration, I have decided to step back from social media for a while. My house has been sold, and we begin a new chapter in our lives.

 As we make the move to our new house in April, I need to place my focus on my family and the work involved with making our new house a home.

I will continue to work behind the scenes with the JillianHayes Foundation, and I will post our activities surrounding Melanoma Awareness.

The billboard for Caregivers has been paid for, thanks to all of your generous donations.THANK YOU for all of your help involved to make this happen! I will continue to accept photos through March 31. The billboard will be displayed sometime in May for Melanoma Awareness month. I'll post the dates and locations once I get that ironed out with the billboard company.


I’m not gone for long,  just taking some time needed to move through some important transitions. I can be reached via email at jemsforjilly@gmail.com

Thank you everyone for your continued love and support.

~Peace