Monday, November 30, 2009
Tuesday, November 24, 2009
My Quilt of Comfort
Friday, November 20, 2009
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.
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
Tuesday, November 17, 2009
Sunday, November 15, 2009
My Entry Closet Transformation--Before and After Pictures
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.
The Beautiful Afters!
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....
Friday, November 13, 2009
The Little Heartthrob
Thursday, November 12, 2009
Beauty Will Rise
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,
For the soul is dead that slumbers,
Life is real! Life is earnest!
Dust thou art; to dust returnest,
Henry Wadsworth Longfellow
Wednesday, November 11, 2009
Veteran's Day Salute
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.
Monday, November 09, 2009
Talking About SUDEP
/ˈɛpəˌlɛpsi/ 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.
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.
Where there is no guidance the people fall,
Saturday, November 07, 2009
Tomorrow's the Big Day
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
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.