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.

Chasing Chase

My wonderful grandson Chase turned 15 today.

He also has the dreaded H1N1 virus (yep, swine flu).

Note the droopy eyes and the flushed cheeks.

His temp was as high as 104 point something!

HOT!

Ordinarily he would be outside doing this. (And Aidan would be copying him.)

Or at the rink doing this...

Or hanging out with Maggie-girl...

Or concentrating on a nail-biting chess game...


Or playing Wii...



Or with his dad doing this.

Oh yeah, their favorite --hot wings!



But probably not doing this! This is actually the one and only time he's ever done this.

This is baby Josie, Kevin's little girl whom he named after Joey, and this is a first for Chase.

The truth is, you're not a real man till you've fed a baby!



This was 2 Christmases ago. I love, love, love being with this guy. Chase is a truly engaging, intelligent, kind, thoughtful, funny young man. He's got political opinions and he expresses them well. He's hilariously funny and he's good at tossing out funny lines from funny movies. He plays scrabble and he even speaks some French. He's a delightful blend of his dad, his grandpa and his Uncle Joey, whom he admired tremendously. I know he misses Uncle Joey a lot and it's been a sad year for him too.

Barbequeing with Uncle JJ, last year.

I would say that right now, Chase is my most interesting relative.


And one of the most interesting things about him is watching him

G-R-O-W!!

Just a little over a year ago, he was almost the same size as me: I'd say 5'3"

This one was taken a half year later... he's up to his mom's eyes: 5'5"

(That's his whole family there, in Hawaii, at his mom's graduation from Hawaii Pacific University. Summa cum laude, I might add. I love the leis stacked round her neck.)

Taken almost at the same time, he still fit under his Papa's chin...

And under his dad's shoulder...

But one year later--not any more! Check this out!!


His dad is 6'2". My guess is that Chase is 5'10".

It amazes me how much more mature his face looks in just a year. So handsome.

Oh, can I tell you how very much I love these chocolate drop eyes?

They see everything and they are taking it all in. And we don't yet know all that he will be, but we know he's going to be a world changer.

Happy, happy birthday to my amazing grandson. Your Nana loves every inch of you!

Don't let anyone look down on you because you are young, but set an example for the believers in speech, in life, in love, in faith and in purity.

1 Timothy 4:12

Maria Shriver and Friends on Grief

Here are some snippets from various bloggers and the CNN report on the Women's Conference 2009 held two days ago in Long Beach, California. This was from a round table discussion on Grief, Healing and Resilience:


"Thousands of women in the arena quietly wept as Maria described her ongoing and deeply painful walk through grief from the death of her beloved mother, Eunice Kennedy Shriver, eight weeks ago, followed by the death of her larger-than-life uncle, Senator Ted Kennedy.When Shriver finished, she introduced the rest of the “grief panel” to the audience. Susan St. James, actress and entrepreneur, lost her son in a plane accident. He was 14 years old. Elizabeth Edwards, senior fellow, Center for American Progress, lost her son in a car accident. He was 16. And Lisa Niemi, widow of actor Patrick Swayze, recently lost her husband and best friend of 34 years to pancreatic cancer, less than two months ago. "

"The conversation flowed as each woman offered simple, but profound descriptions of their journey through grief. Susan St. James said she wondered if she would always think of herself as “the mother of a dead child.” Lisa Niemi described her sadness as being on a cellular level. Elizabeth Edwards noted that it was important for people to talk about her son and to keep his memory alive. “He didn’t just disappear from the Earth.” "

"Describing her feelings about their deaths and the "tsunami of grief" that has followed, Shriver told the crowd: "Grief cracks your heart into little pieces and that hurts, big time, big time. It's hard to concentrate, it's hard to see, its hard to feel, it's even hard to breathe." Despite how put-together she may appear on the outside, Shriver said, "Every minute of every day I can feel my broken heart. I tell all of those close to me, 'Don't worry, I'm fine, really, I am.' ... The real truth is, I'm not fine. The real truth is that my mother's death has brought me to my knees." "

***
"When the grief takes you, it's like your body is not your own," Niemi, who was married to actor Patrick Swayze for 34 years, said during the round table discussion. "I'm just going with the flow. I know I have to go through it". She said the loss "is like an animal all of its own" and the sadness could be felt "on a cellular level."

"Though she kept telling him, "I love you, I love you," and never left his side, Lisa admits, "I've spent two thirds of my life with him ... My regret is that I didn't tell him that I loved him enough over that entire 34 years."
"I am so grateful for what I had and my connection to him, and part of me believes that I will see him again," said Niemi, her voice breaking. "And I'm just going to have to go on until then.""

***
"Kelly (Preston Travolta) called to say it was just too painful for her to talk about Jett," said Shriver. "She said the grief was still too debilitating for her. And I totally understood."

***

"We all hope that this panel will help the grief-stricken among us to see that there is light at the end of what seems like an endless tunnel," said Shriver. "It is our hope that this conversation will give anyone out there dealing with a broken heart or a shattered soul a sense that you are not alone. Because you are not."

***

"There was something sobering and cathartic about this afternoon’s session. Yes, it is hard to talk about grief. As Maria Shriver noted in her comments, “In the United States, we are grief illiterate.” Many of us get tongue-tied when we try to offer comfort to someone who has lost a loved one. But through conversation, compassion, and caring, we can help each other through the very darkest of passages that ultimately, each of us will experience."

(From an unidentified blogger who attended the conference.)

Dodger Blue

There were few things Joey loved so much as a Dodger Game. Here he is a few years ago on a Dodger night, with part of his second family, Tom and Kevin, with the stadium in panorama behind them.

Joey grew up with the Dodgers. We shared season's tickets with our neighbors, with prime seats behind home plate, so during the season we were at the stadium four or five times a month. We had our food favorites there, our secret spots for parking, and Dodger giveaways filled our kids' rooms. Joey and Jaime had even caught a couple foul balls, and they were proudly and prominently displayed on shelves in our home.

Those warm summer nights, downing mustardy Dodger dogs, cracking peanut shells and dropping them in piles under our feet, watching the jumbo screens and fireworks on the special nights, and cheering on our team...our whole family loved the details and rituals of Dodger night.

Joey also played Little League as a kid and baseball was his favorite team sport. It too became a family pasttime. His dad took him to the batting cages, and I learned how to be the official scorekeeper. I spent many springs and summers at the Little League field, up in the announcer's booth, recording hits, runs and errors for league statistics.

His major league team won the championship three years in a row. Joey played the catcher position, but he would also pitch and play shortstop. We all know how maniacally competitive Little League coaches can be, and he definitely had one of those, but the assistant coach was a gem. He was actually a sports writer for the Los Angeles Times, and he had a knack for writing beautiful and encouraging letters to each player on the team. That's something special a mom remembers.

For many years, Joey breathed baseball. He had an extensive and expensive baseball card collection. His hero was Orel Hershheiser, the incredible Dodger pitcher who was also a committed Christian. The Dodgers were his favorite entertainment, his best night out, and a huge bond with his dad. As he grew up, that passion continued as it connected him to his college friends, who developed their own new rituals for Dodger nights, and with a city that he loved.

In the bottom corner of this picture, I captioned it "The Grand Slam!". That picture was taken so many years ago, I don't even remember the moment now. It obviously was a proud one for all of us. I do know that my kid had fun playing baseball--and that baseball not only shaped his character in a positive way, but it also bonded us as a family.

The night after Joey's L.A. memorial service, we all went to a Dodger game in Joey's honor. Joe somehow got 30 Dodger tickets for $2.00 each off of Craig's List, and between friends, family, and cousins, we used them all. Though I have to say I was barely functioning that night, and I sat there in a fog of unspeakable grief, this night was extremely important to Joe. It had been a father-son ritual for so many years, could it now, really, so suddenly be over? We hadn't yet begun to count the layers of secondary losses, but this was a huge one. In hindsight, I see it as the first of many attempts we've made to bring Joey back to us.

In the picture above, Joe is draped with Joey's favorite shirt--the blue plaid one that shows up in so many of his pictures--and in his bright red Little League All Stars jacket. As we sorted through his belongings, we had found this precious red jacket hanging in his closet, saved from 16 summers prior, meaningful enough to Joey that he had kept it since he was a bat-swinging kid. I never knew till then that it had been among the few personal possessions that he had brought with him when he left home for college at USC, and ended up staying in L.A.

Is there baseball in Heaven? I don't know. You can't stretch scripture to include it, like you can the possibility of dogs in Heaven. It is one of the great experiences of this life that may, or may not, go with us into eternity. I know for us, it was one of the better parts of the world we had built for our children. We miss what it once meant to us. We try to keep the interest alive, but without Joey, it's simply not the same.

The World Series starts soon, and I'm sure we will be watching it, even though this year, it will be without the Dodgers. But worst of all, and the one we will forever be trying to come to terms with, it will be the end of the second baseball season without our beautiful son.

a different kind of night at Dodger Stadium...

Auntie Viv

Uncle Don, Auntie Viv, me, Joe.

Viv is Joe's sister, and my children's closest auntie.

Here, she is comforting my husband, her brother, after Joey's passing.

They are sitting in Joey's green chair in his little L.A. bungalow. That chair is so precious to me now.

Praying over us as we made memorial service arrangements. I am hidden inside that huddle, so protected by Vivian and my two girlfriends, you can only see the top of my head under Vivian's cheek.

Below, you see Auntie Viv in happier times. I think it's a NAWIC event. National Association of Women in Construction. That's her professional side. I know she organized this whole event, cuz that's what she does--organize things. Judging from the papers in her hand, she's about to take the microphone and get the party started.

She's also extremely thoughtful and deeply compassionate. She continues to comfort us, over and over again. 17 months later. She seems to be a bottomless well of comfort.

She came to be with us last Thanksgiving, and is coming again this year. Joey and his friends spent many of his L.A. Thanksgivings at her house, when we lived in Maui. He loved to hang out with Uncle Don and Auntie Viv. They're contemporary and cool, and bridge the age gap easily.

Here are the flowers she had sent to us the other day. She took great care that it would arrive on the 22nd, our sad day of every month.

I long ago lost track of the number of times she has sent flowers, notes, cards, emails, and text messages in the past year and a half.

Flowers that are the colors of Joey's auburn hair.

The enclosed message.
Emotionally present.

We love you, Viv.

Romans 12:10
Be devoted to one another in brotherly love. Honor one another above yourselves.

Birthday Girl Bio

The Birthday Girl had the flu yesterday, so I was busy nursing her back to health, and there was no congratulatory blog on her big day. So today I'm going to overcompensate and give you a big look into her life. She's a pretty interesting girl, so you'll enjoy it.

Here she is with her whole adorable family. She's one of those lucky girls who's got a truly wonderful, devoted husband--one who will do anything for her. She and Drew have been married for 13 years and she was a military wife for most of that time. After watching my daughters and their friends for the past decade, I've decided no one serves their country like a military wife. Their sacrifices are immense and these women are the unsung heroes. (Don't even get me started on that one...)

Here's her cute house. She likes to plant flowers and has something of a green thumb, as you can see. It's much prettier than the picture shows.

Here's a shot of the inside. I just love the way she's hung her family pictures here. She's got a decorator's eye and a really cute home. I think Pottery Barn knows her on a first name basis!

Now, before you go thinking she leads a storybook existence, check this out. This is what the bathroom looked like right after demo! Eww! Mold inside the shower walls! She and her friend Crystal are remodeling it themselves. It is about half-way done, and looking great, so I'll publish the pics when they are finished. You've got to be impressed that they would even tackle a job like this!

She's also into health and fitness. She's a Crossfit trainer, and she coaches us three mornings a week in her garage. She can personally take the credit for the fact that my limbs still move. Thanks to her, I can do squats, sit-ups, push-ups, pull-ups and even run around the block if I have to. She is a dedicated coach, and we all need her and love her for it.

Jaime is in to her family. She laughs a lot with them. She's also into health and she's diligent about feeding them nutritious, organic food. No McDonald's in this house. She's a really good mother and gives her kids a lot of guidance and attention, instead of just "things". She makes them tow the line, too. So her children are well-behaved, grateful kids, and that makes them a pleasure to be around.

This was when the world was still right, before Joey went to Heaven. Jaime and Drew were still pretty newly married here and their first-born was just an adorable wee thing. I love how fresh-faced they were--just starting their lives together. Joey was home from college for a visit. Jaime and Joey really liked each other once he grew up! Before that, he was just the annoying little brother and she teased him pretty much all the time.

(My goodness, look how all my children dwarf me! How I miss being in the middle for those family hugs. )

Once they grew up, they couldn't get enough of each other. I know not all siblings are this close, but for some reason these 3 are. They didn't live near one another, so maybe that was part of the great chemistry they had together. It was always a grand time when Joey showed up. I know Jaime misses her brother every moment of every day.

One of my favorite shots of the three of them--all of them so radiant with the simple joy of being together.

As you can see, Jaime's a pretty adorable girl. She's funny, insightful, and a natural leader. She is a legendary dancer, who always takes center stage when she gets her groove on. She is also into music and can pretty much "Name that Tune" on any song from 1980 forward. She's also feisty, out-spoken and honest, and she loves God. She is a breath of fresh air.

This is both of my girls in their tutus. Jaime is in the blue one, and was not yet 2 years old when I took this picture. She pretty much lived in her tutu for a couple of years. Then she became obsessed with bathing suits, and would wear them as a second skin, never removing them, even when bathing. She wore a suit till it was shredded, then we switched it out for a new one. I don't think she does that anymore.

She looks like she's got a secret, though.

Here, Jaime with JoAnne, me and Rachel. I love this shot of all four of us girls. We all love it when Our Rachel comes to visit. Rachel and Jaime have an extra special bond, I think because they remind each other of aspects of Joey. Anyway, they seem to get each other's humor and laugh at the same esoteric, subtly sarcastic jokes.

Jaime also adores her dad and laughs at every single joke that comes out of his mouth--no matter how many times she's heard it! They are kindred spirits. Once when she was little, she told me that her dad scared her (I don't remember why--what was it, Jaime? ). But as you can see, not anymore.

Here she is with her big sissy, JoAnne, (who is, judging from the soup JoAnne brought for her yesterday, her second mother), and two of her dearest girlfriends, Crystal and Stephanie. Jaime's got a knack for making friends. She's got several really close girlfriends from childhood that she keeps up with long-distance. She's got another group of friends from Maui that she keeps up with. She doesn't do "superficial" and tends to have substantial, deep, and long-lasting friendships. Once you're in her heart, she never lets go!

Bosom Buddies (no, I didn't just say that!)

This is Kristen, with her mom and my friend, Kathy. Kristen is Jaime's best friend since they were in diapers. Now those two have got some stories together! And a very special friendship.

The kind we all wish we had.

Both my daughters made it through adolescence and to adulthood without a body pierce or a tattoo. I was always proud of their clean, beautiful skin. But when Joey passed, it felt necessary to put his name on our arms. Jaime keeps her brother near her this way. This is what is on her forearm now:

This little slice of Americana is from their high school days--Jaime was a senior, Joey was a freshman (but still such a baby). These were school team photos, but I never heard how this shot got taken. Who initiated it? Did you do that, Jaime? I doubt that Joey, as a lowly freshman, would be so bold. This just captures such a great moment in time, that we would have forgotten without this picture. The Lesson? Take pictures, people. You never know when they might become essential to your existence.

With her beloved brother on a cruise ship.

Well, I could say more, but I've already said a lot. She's a keeper, that girl. She gives a lot of love and delight to all of our lives. Happy Birthday, dear Jaime, and wishes for a blessed year. Your Mama loves you so much.

We know our birthdays will never be quite the celebration they once were, but with each passing year we know we are closer to being all reunited again. Thanks for being our girl and walking arm-in-arm during the worst that life brings.

We all love you, Beautiful Girl .

Psalm 45:11

The King is enthralled by your beauty; honor Him, for He is your lord.

I Wish...

Wish I could just check in with my son

Wish God would speak to me and settle my heart once and for all

Wish I would have a dream like Gannett Girl's dream (but I'm so glad she did)

Wish my friend's daughter didn't have a seizure today after losing her son to a seizure 2 years ago

Wish the Dodgers would win for my husband's sake

Wish I could lose 10 pounds and keep it off

Wish I had the energy/motivation/organizational skills I once had

Wish I could give my children everything they need right now

Wish my family wasn't feeling the stress of grief

Wish we could talk more about how much it hurts

Wish I could write what I feel and get it out, out, out

Wish life was easier for everybody

Wish I understood the why's

Wish I could spare my grandchildren from pain

Wish I liked the cold better

Wish I were a ray of sunshine

Wish I had more faith and could totally trust God in the dark

Seek him that maketh the seven stars and Orion,

and turneth the shadow of death into the morning,

and maketh the day dark with night:

that calleth forth the waters of the sea,

and poureth them out upon the face of the earth:

The LORD is his name.

Amos 5:8

Almost Speechless

This is a picture of our new fledgling church--Essential Church. It just started back in February, and we currently meet in a school because it's expensive buying and maintaining property. In fact, we didn't think a building was anywhere in the near future, but in this picture, our gifted pastor is making a "Big Announcement" (notice the screen). He revealed ---drum roll, please--- that another church in town with a declining membership had given us their 7-acre property. Yes, you read that right. A $4 million dollar property and they gave it to us!

Included: a spacious and fully stocked 15,000 square foot building.

Jaws dropped around the room, and not surprisingly, we erupted into applause.

Here, Steve's lovely wife, Melissa, talks about a verse that she had hung on to: Jeremiah 29:11. "For I know the plans I have for you, declares the Lord. Plans to prosper you and not to harm you, plans to give you a future and a hope".

But really, what an amazing answered prayer this place is! Melissa gives God glory for doing more than we could ever ask or imagine.

While we were listening to the announcement, a group of people were over at the new property preparing spaghetti lunch for us. When our morning service was over, we high-tailed it over to the new property to check it out. Oh my, it is indeed so much more than we could ever imagine. It is nothing but POTENTIAL! Who knows what lives will be changed in this place.

Here's the auditorium with lunch over and us out of there and the chairs all set back up in place. This incredible building also has about 10 children's classrooms, 6 adult classrooms, a recreation/game room, a fenced playground area, a full kitchen, and a piano and organ! You can see more if you go to my link for Essential Church.

What do you say to something like this, besides thanks to the generous people who gifted it and

"Thank you, God!"

I've never heard of such a thing and I'm almost speechless.

I'm just praying that this will be a haven of hope, healing and comfort for people, and that God will be pleased by how we serve Him in this amazing place.

Bathroom Remodel--Before Pictures

Remember this? Six days after we moved in to our new house, the water heater in the attic, (yes, you read that right), the water heater in the attic burst and flooded our upstairs causing significant damage to several rooms.

Here the girls from the insurance company tackle the clean up and try to figure out what to do next.

Yuck and Ugh! Soggy insulation from a collapsed ceiling.

Three rooms were flooded and the blowers blasted 24/7 for 3 noisy weeks.

Check out the water damage in the bathroom. Ewwww!

While we wrestled with the insurance company, we had the good fortune to meet a friend of a friend, Dan from Flawless Carpentry.

Dan is the Man--the ultimate remodel/fix-it guy. He knows how to do everything, is intimidated by nothing and he takes a lot of pride in his work and his work ethic. He is honest, skilled, efficient, and reliable. He is also a really great guy which is important when someone is in your home every day.

The whole bathroom had to be ripped out.

Dan had to saw through the old fiberglass tub/shower to get it out.

The demolition is done. Dan measures twice and cuts once. He's a perfectionist, which is just what you want in a carpenter. His standard is higher than ours!

New plumbing and waterproofing in the shower. Now we've got a blank canvas.

It already looks better!

But wait till you see the finished product. Just scroll down to see that.

Gorgeous!!

Bathroom Remodel--"After" Pictures

TA-DA!! Dan's beautiful, precise tile work. It feels really good under foot. Don't you just love our retro tile? It's in the shower and on the bathroom floor.

Here you can see the crown molding at the ceiling, the subway tile in the shower,

and you get a little peek at the wainscoting.

Here: the vanity, the granite counter top, the mirror, the new faucet and hardware and a shiny bright light fixture.

Dan the Man--Voila!!! He makes it look sooo easy!!

Here: the red shower curtain and towels on the snazzy hooks.

A nice new Kohler toilet--the little things mean a lot!

We're done and we LOVE it!!

See the Hawaiian leis on the hooks reflected in the mirrors?

Those are in honor of Dan's quality workmanship.

He really should have his own show on HGTV.

Thanks, Dan. You're the BEST!!

Be watching...new project coming soon>>>>