Friday, July 30, 2010

Mid-Summer Grandchild Update

It's a hot, hot summer, but the kids are managing to have fun anyway. Kids are like that.
All except this one.
He cut his Achilles tendon on a piece of broken glass while taking out the trash. Bad trash. Bad cut.
He earned himself a night in the hospital, and 3 months in a cast.
Hockey, his 5-day a week habit, is disappointingly off the agenda till the Fall.
So is swimming, surfing, and a full shower.

He's got a great attitude about it though.
Helped along, I think, by the X-box that was waiting for him at home.

Unless he has to pose for too many pictures. That makes him grumpy.

But he pulls it together for one more shot.

Back at the ranch, the rest of the kids are adept at finding swimming pools to cool down in.
This high-flying jump was after summer (read "sweaty") soccer practice.

And then there's the blessed miracle of water parks. We've got to kiss the feet of the fine folks who invented these things. Hours of cool fun in the too hot sun.

Smiling faces...

Cool refreshment...

Happy kids!
We are finding ways to get through our long, hot summer and look forward to the beautiful Fall season in Virginia. That's the very best time of year here. Still, it's so good to be near our grandchildren, no matter the temperature or the season. They truly make our life worth living.

Thursday, July 29, 2010

SUDEP in the New York Times

SUDEP, Sudden Unexplained Death in Epilepsy, was the syndrome that caused our son's death. We had never heard of this risk till our son was already gone. Not one neurologist in 16 years of treatment had ever mentioned it to us. There is a movement afoot to educate families with epileptic members of the risk. I was very happy to see that this article appeared in the NY Times. The story, unfortunately, is always the same, and ours parallels the Wulchin's almost exactly.

Unmasking Silent Killer in Epilepsy
The New York Times
Published: July 26, 2010

On July 9, 2009, Steve Wulchin went to wake his 19-year-old son, Eric, in their home in Boulder, Colo. Eric had been given a diagnosis of epilepsy three years earlier, but other than that, his father said, "there was nothing out of the ordinary." His seizures had been well controlled; he had not had one in six months.

Yet that morning, Mr. Wulchin found Eric lying on the floor. CPR and paramedics were too late; Eric had died at about 2:30 a.m.

The cause of Eric's death was ultimately listed as Sudep, for sudden unexplained death in epilepsy. The syndrome accounts for up to 18 percent of all deaths in people with epilepsy, by most estimates; those with poorly controlled seizures have an almost 1 in 10 chance of dying over the course of a decade.

Yet many patients and their families never hear about Sudep until someone dies. Mr. Wulchin said none of Eric's four neurologists ever mentioned it to the family.

"The message we got back was, 'There's no reason why he can't live a long and normal life,' " he said. "It never occurred to me that this was a possibility."

Now, physicians, researchers, advocates and relatives like Mr. Wulchin, a technology executive, are trying to raise awareness about Sudep. One of their goals is to establish registries of deaths and autopsy results, building databases to support future research.

Sudep most often affects young adults, typically ages 20 to 40, with a history of the convulsive seizures once known as "grand mal." Others at risk include those with difficult-to-control seizures, or seizures at night; people who take a large number of anti-epileptic medications or take them irregularly; African-Americans with epilepsy; and people with epilepsy whose I.Q. is under 70.

Many victims die in their sleep, and their bodies are often found face down. That prone position suggests that they may have had a neural, respiratory or cardiac crisis - or some combination - that left them momentarily unable, like SIDS babies, to rescue themselves from suffocating.

"After a seizure, the person is in a dramatically reduced state of awareness, and even their reflexes are reduced," said Dr. Orrin Devinsky, director of the Comprehensive Epilepsy Center at New York University.

For most people, he went on, "once your airway's obstructed, you roll over. For people with epilepsy, they don't."

Epilepsy, wrapped for centuries in secrecy and stigma, has gained wide attention in recent years. Not so with Sudep; even neurologists who specialize in epilepsy sometimes feel that mentioning it to patients who aren't at high risk may impose too much of a burden.

"Whenever I speak to a group of colleagues about telling all their patients, it's controversial," said Dr. Elizabeth Donner, a neurologist at the Hospital for Sick Children in Toronto and co-founder of the advocacy group Sudep Aware. "People worry about having a negative impact on the quality of life of people with epilepsy if we tell them about this."

Mr. Wulchin and other advocates say this attitude needs to change, even in the absence of a concrete way to predict or prevent a sudden death.

"People go off and have babies knowing very well that SIDS could strike," he said. "People have surgery and they get the standard warning that there could be adverse reactions to the anesthesia to the point of a fatality. We deal with these kinds of ambiguities all the time."

Dr. Donner agrees. "People with epilepsy have the right to know that Sudep exists, and they have the right to be responsibly counseled about how to reduce the risk," she said. "And actually, that doesn't have to be a painful conversation."

Dr. Devinsky, at N.Y.U., says he often directs at-risk patients to Britain, which has been at the forefront of Sudep awareness. There, devices like mattress alarms and structured pillows are sold to protect against death in sleep.

But just as research into epilepsy has been hindered by stigma, experts and advocates say the silence about Sudep is making it difficult to explore causes and treatments.

"I think this needs to be part of our conversation," said Gardiner Lapham of Washington, D.C., a board member of the advocacy group Citizens United for Research in Epilepsy, whose son, Henry, died in 2008, at age 4. "The more people talk about it, the more people are going to be interested in getting to the causes of why this is occurring, and ultimately identifying ways to prevent it."

Last year, researchers at Baylor Medical College in Houston, led by Dr. Jeffrey Noebels, discovered that a genetic mutation linked to a type of irregular heart rhythm called Long QT syndrome could also lead to seizures - suggesting that Sudep may result from electrical disruptions occurring in the brain and heart together. And this spring, the team isolated a mutation on a different gene that may cause seizure activity in the brain to direct extra impulses through the vagus nerve to the heart, making it slow and, in some cases, stop beating.

Saturday, July 24, 2010

Greg Laurie's Grief

Pastor Greg Laurie lost his son, Christopher, (on the right in the photo) two months after we lost Joey. Today is the anniversary of that day and the words below are taken from his facebook page today. He speaks for every bereaved parent in his words and so I wanted to share them.

We have been deeply comforted by him many times in the past two years. I am so sorry for his loss, yet so grateful that we've walked this road together. I don't know him personally, though I have heard him speak a couple of times at the Harvest Crusade in Honolulu. He is wildly popular, with 40,000 friends on facebook, and a gifted evangelist, drawing huge stadium crowds every summer, all over the country. He is the aging Billy Graham's heir apparent, and in the real world they are very good friends. I do know that he has been an anchor for us in the two years since Joey went to Heaven. He has always been an anointed preacher/teacher, but now even more so because he has increased credibility through his suffering. I highly recommend his blog and facebook page and that of his wife, Cathe Laurie. They always have inspiring things to say.

So with that introduction, I share these honest, heartfelt words from a grieving father with you.

"At first, people would approach with often clumsy attempts at offering sympathy. Other times, they would say just the right thing.

But after two years,very few people say anything at all. Only a handful. Perhaps they don’t know what to say.

Many will ask how a grieving person is doing. Are they over it yet? May I answer for all people who have lost loved ones, especially children?

No. We never will be “over it,” so please don’t ask that, if you please.

Some well-meaning but misguided Christians might say, “Don’t be sad. They are in heaven!” You must have never lost a loved if you say something like that. We know they are in heaven, and frankly, we want them here with us on Earth. So, we are sad.

When the apostle Paul’s friend and fellow worker Epaphroditus fell gravely ill, Paul wrote in a letter: “Indeed he was ill, and almost died. But God had mercy on him, and not on him only but also on me, to spare me sorrow upon sorrow” (Philippians 2:27 NIV).

So even Paul, who certainly had a strong faith and his theology straight, could hardly bear the thought of being separated from a close friend by death.

Are we getting through it?

The answer to that question is yes. Some days are better than others.

The most random things can trigger vivid memories that we did not even know were stored in the vaults of our imaginations. But like little home movies, they play out, and it both comforts and saddens.
But the thing we cannot do is forget. Nor do we want to, even if remembering causes pain.

Yes, our pain is deep, but know this: God is deeper still. He has kept His promises to me and my family. He has been there for us each step of the way, though it has been so very hard.

So we do not sorrow as those who have no hope. But we do sorrow. And we will continue to shed many tears. That’s because our love continues on for that person that has left us."

Thursday, July 22, 2010

Our New Sidewalk

I just love a central sidewalk leading to the front door. Mostly because I hate weaving on the skinny edge of a driveway, trying to avoid the dirty cars brushing up on my clothing as I squeeze my way past to get to the door. So in the past couple of weeks, we hired our neighbor Zach and his friend Jake to create this curvy and functional brick pathway for us.

Isn't it just beautiful! We couldn't be happier with their fine work.

Here's the dynamic duo after a hard day's labor in the blazing hot sun.
To say the least, this is not for the weak or wimpy.

Zach also mows our lawn every week and he is in such great demand in the neighborhood, he seems omnipresent sometimes. I'll tell you why. He's honest, reliable, bright, polite, respectful, and has an incredible work ethic. He is 16 and is as hard-working as most grown men.

His dad and mom have a lot to do with that too. He's been raised well and he is just like them. Truly wonderful, generous, salt-of-the-earth people. His dad has been going through chemo and radiation for the past year to rid himself of a brain tumor, and this family has shown tremendous faith and courage in the battle of their lives. I am kind of in awe of them all, as you can tell. I am also very happy to report that Zach's dad's treatment has been effective and the tumors are shrinking.
We are so blessed to have these amazing people as neighbors.

Wednesday, July 14, 2010

Words to Live By

My son was a gifted writer. He wrote a very long and extremely entertaining blog along with Rachel about their one year Northern Hemisphere van trip. He wrote an occasional magazine or news article critiquing music or politics. But mostly he wrote bits and pieces. He wrote a smattering of journal entries, lyrics to his music, some poetry, and lots of witty, even hilarious emails and blackberry chats on whatever pertained to the docket of the day.

His writing is mostly funny, but now it's become poignant. His list of what he was thankful for on his last Thanksgiving, an April Fool's Day gag in which he told us that he was going to sail around the world, his emails on his last day of his earthly life--all of them are packed with new meaning for us now. In one email he told a friend that his mother (me) always believed him and that it made him feel good. It made me feel all warm inside to simply read those feelings that I hadn't known. In most of his snippets he is expressing affection to friends or family. He poured out a lot of love on people through his words and that is a gift that keeps on giving as we re-visit those words.

So I'm starting a new project. I am gathering up his words and putting them in a scrapbook. I plan to include pictures of the people, places and things about which he wrote. That way, on those days when the missing is so intense, we can pull it out and "hear" him speak to us again.

Proverbs 12:18
Reckless words pierce like a sword, but the tongue of the wise brings healing.

Thursday, July 08, 2010

I Corinthians 4:18

So we fix our eyes not on what is seen, but on what is unseen.

For what is seen is temporary, but what is unseen is eternal.

Philippians 3:20

For our citizenship is in heaven,

from which also we eagerly wait for a Savior, the Lord Jesus Christ...

Monday, July 05, 2010

The Light Show

Seems like half a million people showed up at the beach to watch the fireworks. Here we are, part of the teeming masses waiting expectantly.

I never tire of fireworks. They are always exciting!

They put on a pretty good show down at the beach. Nothing like the one on tv with the Boston Pops, but this one was live!

And the light show in the streets below as people left.
Oh, how wonderful to NOT be in that traffic jam.
A beach hotel on the 4th--priceless!

Sunday, July 04, 2010

Beach Beefcake!

Our hotel has this very cool rooftop pool.
Lots of entertainment value.
Grandson and friends on bikini patrol.
(Not Papa--he's occupied on his droid)

I couldn't resist these 4 guys showing off their (ahem) national pride...

...and the rear view, too!

Son-in-law and a mai-tai in a rare state of utter relaxation...

...and gorgeous cross-fit daughter having fun in the sun.
As I said, lots of entertainment value.

Happy 4th of July!

We are staying at the beach for the 4th of July and I woke this morning to the sounds of a worship band playing. I looked over my 14th floor balcony and was surprised to see this large group of people gathered for the worship service below me. The music was good and Joe and I sipped our tea on the balcony and enjoyed the vibe. I was touched when they sang "God Bless America" and surprised to hear the crowd join in. I thought,
"freedom of speech, freedom of religion, freedom of assembly"--all in one little package below me.
What a perfect 4th of July morning, and the fireworks are still to come!

Last year we visited Philadelphia and saw many of the symbols of our American Revolution. Here Joe stands next to the flag that united the colonies to sign the Declaration of Independence. What wisdom and foresight our forefathers displayed. I am forever humble and grateful for the privilege of being born an American.

In a museum dedicated to Benjamin Franklin, his words shine on the walls and still ring true. I would love for Congress to heed his words. I think I speak for most Americans when I say it's often a place where there is way too much talk, and a disappointing lack of action.

Nonetheless, we love our country and its history and its symbols. This is Independence Hall, the place where our founders signed the Declaration of Independence, starting the greatest experiment in democracy that the world has ever known. It's imperfect and unfinished, but it's still the best thing going on the planet. I am in awe of those who conceived the dream of creating a free society, and for the good our country does for the entire world.

This symbol outside an art museum in Philadelphia says it all for me. Despite its flaws and weaknesses, its divisions and unsettled wars, I deeply love my country.
God bless America.

I hope you all enjoy your 4th of July celebration. I can't wait to sit on the beach tonight, and look up at the sparkling explosions in the night sky, and see the reflections of the falling stardust on the ocean below...and ponder again the wonder of the place we call the Land of the Free.
Pictures tomorrow.

Those who expect to reap the blessings of freedom, must, like men, undergo the fatigue of supporting it.
Thomas Paine

Saturday, July 03, 2010

At the Oceanfront

We just arrived and we were starving. Here's the view, peaking out from our cozy lunch spot.
Crab salad...sashimi...yum....

After lunch, we visited giant Mr. Neptune. Isn't he handsome?
Behind those beach cabanas? People. Lots of them.
See what I mean? Still, it's gorgeous. Our hotel is gorgeous, the view is amazing, and we are having a wonderful 4th of July weekend all together.
Just what I needed.