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

Name Your Price...

Melanoma Awareness Month. This is the month where our grassroots community bands together to make ourselves loud by sharing awareness to this horrific disease. There have been many memorable moments so far this month, just to name a few.

The AAD tried to change our color from Black to Orange. It enraged the melanoma community, but it also brought attention to melanoma and all we stand for.

We have had movement in getting bills passed in several states which would  ban minors under 18 from using tanning beds. Oregon just passed the bill into law, being the third state in the United States. Illinois and Texas are right on their heels, just waiting for their Governor’s to sign the bill into law. People have been working hard to make this happen.

There have been numerous awareness walks, honoring our warriors, and remembering those no longer here with us.

And then there are the Billboards all across Grand Rapids, Michigan showing Jillian’s smiling face, along with her beloved pup, ”Chancy Pants”.  

Indeed, these determined warriors have been busy this month. But at what cost?

I was having dinner with a friend last night when the waitress noticed my blue bracelet and asked me what it meant. It was one of the rubber bracelets with the inscription, “Jillian 9/24/89-12/29/12 Fall Seven Times, Stand Up Eight”. I looked up at her and said, “This is in memory of my daughter who died from Melanoma”.

She stuttered a little bit as she apologized for my loss. I felt the familiar lump rise in my throat as the stinging tears threaten to fall. Looking across the table, my friend said, “That must be very hard for you…what you do”. I didn’t understand what he meant. He explained, “ Your cause. Always the constant reminder”. I tried to explain without breaking down that this helps me with my grief. It helps me to keep Jillian’s name alive. It helps me to fight her enemy.

I’ve been thinking a lot about this exchange. It reminded me that I am not the only person working hard for a cause. There are real hurting people that stand, holding tight to their passion, whatever that may be. We applaud their efforts, congratulate them on any advances, without really realizing what it means for them. What does it mean to be constantly reminded their loved one has cancer, or some other illness? That their loved one is no longer with us?  What does it mean for the person holding a placard with the face of their loved one? There are times when I’m sure those people wonder, what am I doing here? I don’t want this. What is the cost for sharing their stories?

I sure don’t have those answers, but I want to be more aware that there is a price, and to acknowledge their selfless efforts.

So, thank you, my warrior friends for having the courage, the voice, and the determination to continue on this journey towards awareness, in spite of the pain.  

~Peace and Hugs~

Still Standing...

May. Skin Cancer Awareness month is upon us again. Last year I was busy getting donations for several Billboards in the Grand Rapids area in an effort to spread awareness to Melanoma. When the first Billboard was up and running, it was so exciting. Jillian’s own words were, “Chancy Pants is Famous”!

One year later so much has changed. We have five billboards up again this year. I have been receiving texts and emails from individuals who have passed them on the highway. I , myself, was driving home last night and there she was. All lit up, once again sharing her light and her story in the hopes that another young person, another family, doesn’t have to travel the same road our family is currently on.

I’m happy with these efforts, and the progress we’ve made this past year. I promised Jillian that I would continue to try and educate others about the dangers of tanning beds and the sun. And we really are making steps in that direction.

But…..

When I’m alone and I see all the posts and photos on face book showing her face, I am slapped with the reality that Jillian isn’t here. Each photo pierces my heart, and the wound begins leaking all over again. It has been 4 months since she took her last breath here on earth. Seems like yesterday. It isn’t easy being out there. Perhaps it would be easier if we weren’t sharing our story . We wouldn’t be dealing with the constant reminder that our beloved Jillian is not here with us today. As if we needed that reminder.

But we aren’t alone. There are hundreds of people who are currently engaged in their own battle with melanoma, in a battle for their life. There are just as many caregivers who are standing by their side. And those who have lost their loved one to this disease. They are all out there sharing their story, sharing their scars, all in the hopes that someone else will learn that melanoma is way more than a word. So much more than "just" skin cancer.

So we unite. As tough as it is, despite the hurt when the reality of melanoma slaps us square in the face, we are an army with a mission. We Stand.

Please Stand with us against melanoma by joining the event, Melanoma Black Monday, May 6.

Peace~

The Bell....

Last Friday evening I was honored to speak at the Grand Valley State University’s 2013 Relay for Life. I was asked to share my experience as a care giver to someone who has cancer. I’m not comfortable speaking in front of a crowd. I was the kid who was sick the day of “current events” in Mrs. Marlow’s sixth grade class. I was the one who threw up the night of our school play, “Alice in Wonderland”, where I was supposed to play “Mary”. I would have been sucked down that hole, I just know it. I never did find out how the play turned out. I never asked.

I had the week to think about how I was going to stutter and blow it in front of the crowd of people. Of how my mind would blank out and I’d forget where I was, and what I was doing on a stage. I thought about a lot of things this past week as I struggled to find my big girl pants.

Al long ago memory kept playing in my head all week. It was when I took the kids to a local sports store, where they featured a climbing wall. Josh must have been twelve, Jillian around nine. They both scaled it, Josh ringing the bell at the very top. What an accomplishment! Jillian didn’t make it to the top, but I was so proud of that little monkey for trying.

Then it was my turn. I got about half way up before I was ready to quit. My arms were tired, I was ready to be done with this. Until I heard this little voice below me, “Come on mom, you can do it. Keep going”. Immediately Josh joined in the encouragement, “Come on, mom”! 

Nope, I tried, I couldn’t do it, and I started to climb down. Jenni was very young, sitting below with her siblings and I wanted to get back to her. The little voice, Jillian’s voice, got louder. “Mom, remember you always told us NEVER to give up. You can’t give up. It’s what you said mom, never give up”.

I looked down below to where my kids were cheering me on. By then a crowd had gathered, all watching, big grins on their faces. I’m not sure if they were cheering me on too, or if they just found the humor in the predicament I’d found myself in.

I had a choice to make. Oooookay.  I began to climb toward that bell with all my might. My arms were straining, my heart was hammering, and my feet kept slipping, but I was determined now. Slowly, I made forward progress, little by little. I had to reach that bell.  And I did. I rang that stupid bell as cheers and applause greeted me from below. It was a great moment for me. I could have cared less whether I was physically able to climb that wall or not. It was the rare moment you get as a parent when you feel that one of the lesson’s you tried to teach your children really does show value. Simple. You don’t give up.

Change is inevitable in our lives. And some of those changes aren’t always welcome. Loved ones are diagnosed with cancer. Relationships are broken, new tumors are discovered, and loved ones are called Home. We can sit on the sidelines and  ask, “Why did this happen? Why me”?  Or we can slowly make progress forward, even if our feet slip, toward that big shiny bell, sparkling with promise.

Thank you my friends, for your continued support.

Thank you, my precious children. Those here on Earth, and the one in Heaven.

Peace~

Stand...

Saturday. Here you are again. You are not my friend.

It’s the day before Easter. A day of rejoicing, hope and promise. I’ll be honest, this past week I haven’t felt much like celebrating.  This Easter is the first of many firsts our family will experience with “the empty table”. Even though the last couple of years, Jillian spent this day with Steve’s family, I knew where she was. We still talked.

Another first: I was in a taxi cab a couple of weeks ago with my friend Sheryl. The cab driver wouldn’t shut up. He kept rambling, and once his conversation became political, I shut down. Then he asked me how many children I had.I answered him.
“Four. Three here on Earth, and one in Heaven”. Silence.

Sheryl and I exchanged glances, both secretly happy that those words stopped any further conversation in its tracks. Poor guy. Well, not really.

I know many  people are going through the same set of “firsts”.  I, (we) sometimes feel that we need to be upbeat and happy. Sort of like putting on that happy mask. The tears of a clown. I don’t particularly like pretending I’m feeling something I’m not.

As I was talking with my sidekick Mary last week, we discussed this very subject . Kristen, Mary’s daughter, left us 10 years ago at the age of 20. On Christmas Day.  We laughed hard together when I told her that I’m just overall crabby these days. Pretty blunt, I know, but I recognize this in myself. I’m embracing it as part of the grieving process. Mary and I also discussed some of the terms we don’t like when referencing our daughters that are no longer with us. This is her take:

“My daughter didn’t die- her earthly body gave out on her, but she hasn’t missed a beat- she lives on in Heaven, just not physically with me. She still lives”.

Mary and Kristen

Now here comes the next part.

I’m grieving. I’m sad, I’m mad, and I’m missing my daughter terribly, as is the rest of our family. I am not happy about it. In a way, you could say I lost the “joy”. Even though our family is moving on with positive things, something felt “off”.

We have recently started the Jillian HayesFoundation.
I was given the opportunity to share Jillian’s story and spread awareness on WOODV 8 Daybreak yesterday.( click on the video one you get into the website). These all all very good things, it's what we have been striving for.

 And yet. And yet……

Until this morning. A Saturday. Good grief.

I’m listening to Pandora, and the song from Rascal Flatts begins to play, “Stand”. Oh, how I love it when Jillian speaks to me through music.

"You feel like a candle in a hurricane

Just like a picture with a broken frame

Alone and helpless

Like you’ve lost your fight

But you’ll be alright, you’ll be alright”

Cause when push comes to shove

You taste what you’re made of

You might bend, till you break

Cause it’s all you can take

On your knees you look up

Decide you’ve had enough

You get mad you get strong

Wipe your hands shake it off

 Then you Stand, Then you Stand"

Jillian is right there in my heart. She talks to me. She nudges me, and rolls her eyes when I feel sorry for myself. She helps keep me on track. I have been reminded once again that I must live my life like Jillian did. Falling Seven Times, Standing Eight. Always.

So tomorrow I will go into Easter with Hope. With the promise of new beginnings, with renewed strength. Hanging on to the knowledge that Jesus Lives. And so does Jillian, and Kristen. And your loved ones that no longer share the Earth with us.

Thank you, my precious daughter. I needed you this morning.

Peace~

Are You My Mother?

I have always loved mornings. When my kids were little, I’d wake up an hour or so earlier than they did, just so I could have some quiet time to myself before all the busyness started for the day. And a cup or two of uninterrupted coffee. I still do that. Mornings are my time. Time when I can pray and try to sort through the chaotic, rambling thoughts spinning around my head. Maybe I need more than an hour.

I do not like Saturday mornings any more. Jillian died on a Saturday morning. Ten weeks ago today. I wake up now, on Saturdays, and I watch the clock. I relive every single minute of that last morning with her. Those moments are forever seared into my brain. Once 7:30 am passes, I breathe easier.

A dear friend of mine commented that I must have nightmares reliving what she endured. I try not to go to that place too often quite yet. Memories are sneaky though, they can appear unexpectedly. But even though some of those memories are unpleasant or painful, they are still precious treasures.  I have my own personal treasure box just jammed packed with gems waiting for me to open and examine. Some sparkle so brightly, I’m blinded by their light.  Others are scarred and caked with mud. I think with time, my handling them will polish them so they too, sparkle and shine. Just like Jillian did. My precious Jewel.

This week, as I’ve been trying to sift through my thoughts, I’ve been reminded lately of a favorite childhood book that Josh and I shared. “Are You My Mother?”. We would giggle together each time I read that book. We seem to share that same quirky sense of humor. Especially the Snort part. Another precious gem.

With my memories and my new life, I’m learning that I’m not the same person anymore. Cancer changes you forever. Whether you are the one with the disease, a family member or a friend, you just aren’t the same. How can you expect to be?  I had this conversation with Josh last week. His reply to my declaration was, “ We are always changing, mom. Life’s circumstances are constantly changing and we change with them. “ So, there you have it. I guess it isn’t so confusing after all is it?  Our lives change, we change with it. 

I’m not sure who I’ll end up being. I guess I don’t really need to know.  But I do know I’ll always have my faith, my children, my family,  and my wonderful supportive friends to share in the constantly evolving person I’ll become.

Who knows? Maybe I’ll end up being that Snort after all. And I’m okay with that.

Peace~