Monday, November 30, 2009

Joey's Besties

Joey's Best Friends
Thanksgiving 2009
At Tom and Melissa's house-- Joey's second parents.
With the Six Sons, with whom Joey grew up,
and their significant others.
With JR and pregnant Clara, and Theo--
friends and roommates at USC,
and Joey's beautiful Rachel.
I only wish I could have been there to give them all a hug and a thank you. They are forever faithful friends, and we love them all so much.
"It takes a long time to grow an old friend."
John Leonard

Tuesday, November 24, 2009

My Quilt of Comfort

When I started blogging in February, I did it as a way to remember our son, to keep him present with us daily through pictures and memories. Grief is full of turmoil and it's an agonizing and isolating experience. I found I could process some of my painful feelings through the blog and also interact with others on a simple level. It allowed me to keep facing and processing my grief, instead of running and hiding. I knew I would wear out those closest to me if they had to listen to my grief every day. With the blog, I could write it and they could choose to read it or not, and it relieved my sense of being a burden.

I had no idea that it would turn out to be such a place of healing for me. I also didn't anticipate that I would meet other grieving mothers also walking this same heartbroken journey. These women, only two of whom I've actually met in person, are such a help to me--Gannet Girl, Karen G., Chris, Mary Beth, Sharon, Ruthie, Jenny, Kay, and Caitsmom, and others that I am still getting to know. They are all women of faith who, like me, are trying to come to terms with an upside-down world, an empty place, a trauma, and an aching loss that will never be fixed till this life is over. We weep together and are writing our own book of Lamentations.

These women are mirrors to my own heart, and like members of a support group who tailgate on one another's insights, they write eloquently about feelings that I often can't put into words. Sometimes they express angry feelings, sometimes they are wrestling with unanswered questions, often they are forlorn and full of longing. Other times they inspire me and build my faith and hope in God. At all times, they understand, support, and remove me from the lonely icy cold of isolation. They don't rush me, they don't judge me, and they don't roll their eyes. They don't get tired of hearing about the pain that never leaves my heart.

So this Thanksgiving, I send a very big hug and thank you to all of them. They are my patchwork quilt of comfort, for which I am truly, deeply, incredibly thankful this year.

Friday, November 20, 2009

Last November

At this time last year, we were on the road. We had to move Joey's anthropomorphic VW bus, fondly known as "Gunther", out from a storage facility in L.A., where it had been languishing for six months, for lack of a better plan. We decided to drive Gunther cross country to its new home, and hopefully new term of service, with our grandchildren in Virginia Beach. It was stuffed full of Joey's life--his chair, his guitars, his backpack and ski gear, and his ashes. We had fears that Gunther couldn't make the trip, but Rachel reassured us that this dented, but sturdy VW was road-hardened from traveling round the Northern Hemisphere and would not fail us. And she was right. We made the long journey without mechanical incident, and arrived safely at our destination the day before Thanksgiving, just as planned.

At that time, my chest cavity was still filled to the top with leaden boulders of grief. I barely breathed. I lived in a heavy fog of shock and confusion, and could hardly think, move, plan or execute. I had no capacity for pressure or stress. I was in excruciating, heretofore unimagined pain, and each day was necessarily basic, simple and uncomplicated. It was as if all my bones were broken and I dared not move anything for fear of the pain it would unleash.

Gunther's gear shift knob and funky rastifarian foot pedals, just as Joey and Rachel found them when they bought it.

The sorrowful but necessary trip turned out to be an unanticipated blessing. It was hard leaving the safety of our home in Maui to go back to L.A., the scene of so much devastating loss. But as we drove away from L.A. out into the wide expanses of the West, away from people and cities and buildings, over rugged mountains, through long green valleys, peering down into paintbox canyons covered with rocks and trees, we began to lose our fear of the road and of change. We soon found we relished the start of each day's drive, sitting in the refuge of our son's van, experiencing some of what Joey and Rachel lived when they took a similar trip the year before; and particularly soothing for us: the peace of miles of solitude that stretched before us with no responsibilities except to fill the gas tank.

We had a modest time table, and so we could take each day as it came, making time to stop and smell and listen and feel the changing season as we moved east. One Sunday morning near the end of our trip, we had an especially magical drive through the Smoky Mountains. There were few other cars on the road at 7 a.m. , and the light was different--so clear, shimmering with life, so quiet you could hear it, so peaceful our raw nerve endings settled into a purr. And the peace touched our ragged souls, both of us, deeply, maybe for the first time since Joey left. We listened to worship music and let it soak into us as we drove wordlessly, through the most beautiful cathedral of them all. The trees spired high over our heads, and the most incredible blue sky sat straight above us, peeking in and out of the trees. It was a holy moment. It was one of those moments when you know there is something more personal and powerful and mystical to the universe than what we've pieced together so far.

My little camera could not do it justice, but these pictures will give you the idea.

We drove in a sacred hush, quieted by the beauty outside our windows. I was beginning to realize that nature could comfort me in a deeper way than anything else and more than I thought possible. No words, no music, no person, could give me the internal balm that the beauty of nature gave me.

I will admit I was suspicious of that. I have been trained to worship the Creator, not the creation. When our pastor recently taught on the book of Job, I got a new perspective. I've now concluded that at times of deep suffering, we can't see or hear the Creator. When Job's torrent of pain and confusion finally poured forth in despair and frustration, he got smack into God's face with his questions. And God smacked right back-- not with answers, but with his own set of questions: "Where were you when I laid the foundations of the earth?"

Four chapters later, God's basic response to Job is "look at what I've made--look at Nature". It doesn't tell us "why", but it does declare the greatness of God and that He is big enough for all that we doubt. That makes sense to me and has freed me to do what I had already been doing, finding solace in the beauty of nature.

It was the most memorable segment of our 5000 mile trip, and it was the start of a turning point in our lives. We emerged from the mountain passes into the wide, grassy valleys below.

We had planned to stay with our daughters just through the holidays, but while we were there, we made the decision to pack up our own previously idyllic island life and move to Virginia. People are usually surprised by this and ask how we could do it. Simple. We couldn't bear any more separation from our beloved children. It was already too much that Joey was gone. And so began a new beginning...

A year later we know it was the right decision. Everything has changed, nothing is the same, yet we are surviving. We feel less heaviness. We shed fewer tears. We are settling in. We miss our son endlessly, and yet we are slowly trusting the Maker of it all that there is a bigger plan.

Thursday, November 19, 2009

Till Death Do Us Part

so young
so much in love
never imagining that our future held
unbearable grief
we are learning
to bear
holding on
for better for worse
love you
husband of mine
Eccles 4:12
Though one may be overpowered, two can defend themselves.
A cord of three strands is not quickly broken.
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Tuesday, November 17, 2009

leaves fall

the leaves are falling now

at my feet

soft and damp

layered together

to be swept up

bagged up

tossed away

as if they never bloomed green and lush in my trees

waiting waiting


a long icy cold


I hear they will appear


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Sunday, November 15, 2009

My Entry Closet Transformation--Before and After Pictures

Ready yourselves. I'm going to reveal a dirty family secret. Just look at this mess!
Shoes, coats, scarves, all in a deplorable state of disorder!

Yes, it's true! We would just coldly and carelessly chuck our shoes inside the entry closet when we came in the door! What a mess.

This is what it looked like pre-remodel-- with the doors off and all cleaned out. Poised to start the remodel. Check out Carpenter Dan's plan below.

~Dan the Man's Plan~
Moldings, bench, beadboard, hooks, shelves.
Scroll down to see the finished product...

The Beautiful Afters!

~The Finished Product~

Gorgeous! 13 hooks, a shelf and a lift-top bench for the shoes. It also looks gorgeous from the inside!

Dan the Man, remodeler par excellence!

Another fantastic project by the ultimate craftsman.

We love this guy!

Please notice the padded lift-top bench.
Thank you, Dan! You're a genius and a gentleman!

Note that the shoes are now neatly laying in the storage bin below.

Last view of it empty...5-4-3-2-1....

This is how it looks now as we start to fill it up! Beautiful and orderly--the perfect balance between form and function.
Simply lovely!! Oh, I love this little nook!

Friday, November 13, 2009

The Little Heartthrob

I'm just sayin'--the kid is cute!
Happy Birthday Party Day, Aidan!
Your Nana adores you.
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Thursday, November 12, 2009

Beauty Will Rise

Steven Curtis Chapman and his daughter, Maria, who is now in Heaven.

I have felt linked to this family's grief, partly because they lost Maria the day before we lost Joey, and partly because I have always loved SCC's music. He continues to inspire and comfort me. His wife's blog is linked in my sidebar. She expresses feelings similar to my own and I am grateful for her honesty and transparency through the past 18 months.

Reported in CNN today:

"Chapman, who has been singing Christian music for more than 20 years, was now faced with a God he had not known before. Everything he thought about God was different, he said, and he began to wrestle with his beliefs.

His new album, his 19th, entitled "Beauty Will Rise," is his personal testament to Maria's life and the overwhelming belief that they will be together again one day."

"Reviews have been positive and respectful. The New York Times called it "stirring." Billboard said, "Never has a writer's pain sounded more achingly raw. ... The new set examines unfathomable grief, but also celebrates an extraordinary young life."

"Milligan said that he believes the music's meaning transcends the tragedy that inspired it.
"In recording these songs he knew they were going to bring hope to a lot of people," Milligan said. "And that is so much what he is about. These songs are timeless, people will always be hurting and these songs will always speak to them."

The Only Way to Go On

55. A Psalm of Life

What the Heart of the Young Man Said to the Psalmist

Tell me not, in mournful numbers,
Life is but an empty dream!

For the soul is dead that slumbers,
and things are not what they seem.

Life is real! Life is earnest!
And the grave is not its goal;

Dust thou art; to dust returnest,
Was not spoken of the soul.

Henry Wadsworth Longfellow

Wednesday, November 11, 2009

Veteran's Day Salute

In honor of Neil Roberts' sacrifice in Afghanistan.

Last night, 6-year-old adorable grandson Aidan fed the bunnies and made sure they had water before coming into the house for the night. He told me that he loves animals and loves to take care of them. I told him he might want to be a veterinarian when he grows up, so he can take care of animals all the time and fix them when they are sick or hurt. And he very quickly and confidently said, "No Nana, I want to serve America...I want to work with my dad." Those are his exact words.

To all members of our Armed Forces, especially those at Ft. Hood and their families:

To my son-in-laws and my daughters and grandchildren, who've served unsung right beside them, and all their sacrificial military friends:

To everyone who has ever served or supported someone who served,
THANK YOU for giving me my freedom.

Monday, November 09, 2009

Talking About SUDEP

It is National Epilepsy Awareness month. Here are some of the participants at our local walk for Epilepsy, yesterday, in Virginia.

Pronunciation [ep-uh-lep-see]
a disorder of the nervous system, characterized either by mild, episodic loss of attention or sleepiness (petit mal) or by severe convulsions with loss of consciousness (grand mal).

Talking about SUDEP-Sudden Unexplained Death in Epilepsy

SUDEP is caused by a sudden, spontaneous cardiac or respiratory arrest in an otherwise healthy individual with a history of seizures.

John Travolta's son died of SUDEP, although they don't say that, because Scientologists don't admit to the existence of certain medical disorders. Florence Joyner--aka "FloJo", the Olympic runner, and martial arts master, Bruce Lee, are also believed to have died from this disorder. It is on the frontiers of medicine, and has only recently been recognized and researched. Many doctors are still unaware of it.

Next to me is my friend, Jen. Her 7-year-old son Ben also died of SUDEP. Our daughter JoAnne and our granchildren, Chase and Clare, were very strengthening for us.

We are in the awkward and uncomfortable position of being the bearers of bad news. Of the 150 people present, all of whom either have epilepsy or are parents of someone with epilepsy, not ONE of them raised their hand when I asked them if they had ever heard of SUDEP.

We had never heard of it either, till the day after my son went to Heaven. But ignorance is NOT bliss. I WISH I had known. Things might have been different. That's why we decided to do this.

Pictures of Joey--trying to communicate his vitality, vibrancy and how he lived. He had epilepsy, but epilepsy didn't have him. Our son viewed his seizure disorder as an inconvenience and did not define himself by it. He knew he was in good company with Dostoevsky, Van Gogh, Julius Caesar, Napoleon, and Neil Young. This was our way of encouraging the many kids who were there whose lives are limited by seizures.

Of course, it's painful to then tell them that they are also at risk for sudden death. This was not easy to do in any way. Life is very messy.

The somber audience.

These parents already have fears for their children, and we just added to the pile. This is when you've got to be thankful for the human capacity for denial. It helps people go on when there is just too much else to think about.

They were warm and gracious and thanked us for coming. We were drained. We hope we raised their awareness and their vigilance, and prevented tragedy in some way.

And, thanks to our circle of friends, we raised way more money for the Epilepsy Foundation than anybody else. By a long shot.
That part felt really good.

Proverbs 11:14
Where there is no guidance the people fall,
But in abundance of counselors there is victory.

Saturday, November 07, 2009

Tomorrow's the Big Day

Tomorrow, we are walking and talking for Epilepsy. Joe and I, one of our daughters and two of our grandchildren will don the memorial t-shirts pictured above and go do something urgent and important. The rest of our family are out of town, but many people have assured us that they are with us in spirit.

I'm emotional about doing this. Shaky almost.

What am I feeling? First of all, scared. Scared of saying the wrong thing and frightening a vulnerable group of people. There will be children with epilepsy present, and I want their parents to know about the risk of sudden death without giving anyone nightmares. Can that be done? I don't know. I only wish someone had told us. So the Golden Rule tells me I need to say it. Knowledge is power, and I want to empower other families.

Second feeling: sad, sad, incredibly sad -- to be reminiscing about my son and our aching loss, and the fact that he is spoken of in the past tense now. To be wearing a t-shirt with his name on it. I hate that because it finalizes his absence.

Third feeling: Stunned. Our friends, in a wonderful outpouring of support, donated over $5000 to this cause. We continue to feel so very loved and carried by people.

Fourth feeling: Proud. Glad we are using our story to focus on a tragic medical syndrome that needs to be researched and cured. Hopeful of being able to help other families avoid our fate.

Fifth feeling: weak. tired. little. too small to make a difference. But marching forward through the open door in front of us anyway.

Pray for us...I'll let you know how it goes.

Monday, November 02, 2009

Walking for Epilepsy

From Joey's friends, in response to my question, "Where were you guys in this picture ?"
JR: "That trip we went to Amsterdam, Brugges, Paris, Florence and Cinque Terra. My guess would be Amsterdam."
Theo: "I think JR's right. Judging by the buildings and the bikes, and the fact that we're all bundled up, it has to be Amsterdam. It started snowing there right before we returned home."
A month ago, I met with the leaders of the Epilepsy Foundation of Virginia. It was my first ever contact with the Epilepsy Foundation. Though our son had epilepsy since he was 12 years old, it was so well-managed by medication, that we were never the ones, of the over 3 million Americans afflicted, who looked for help or support. Fortunately, he wasn't one of those children who have random, uncontrollable seizures. His were almost predictable--at least he knew when one was coming. And they were infrequent, and almost always at bedtime when the lights went out. We hated to see him have a seizure-- it was frightening and it hurt to see his precious body unconscious and tightly clinched in an almost fetal position. But death? No, we didn't think about that.

As the doctor told me when he was young, "The worst thing that can happen is that he will have a seizure! As long as he doesn't hit his head, he'll sleep it off and be okay after a few hours." The doctors told us Joey could do anything but skydive or scuba dive. Back then, the goal was to prevent Joey from identifying too strongly with his epilepsy, to encourage him to live a full and active life. My job was to not "over-mother" him, but to let him grow up unfettered by fear. I think we more than succeeded at that, but now we sadly know how very ignorant we were about the true danger epilepsy posed to Joey.

That was before the syndrome that killed him had been identified and labeled. That was before we had heard the term SUDEP-- Sudden Unexplained Death by Epilepsy. We discovered that term the day after Joey died, when we were in a state of shock and numb disbelief and googling the words "death by epilepsy". That was before we knew that our son, with his nighttime seizures, was at higher risk for sudden death. That was before we ever heard the unimaginable-- that epilepsy kills as many people in a year as breast cancer.

On Sunday, our family is going to walk for epilepsy. We are going to share our tragic story and hopefully we can increase awareness about SUDEP. We hope we can spare others from the heartbreak we have been through.

Please check out our fundraising site in the sidebar on the right.