Too close to home: Bode Miller's younger brother died from a seizure

Yesterday was the final day of the Winter Olympic games in Sochi, Russia. We have spent hours of time and many late nights over the past two weeks watching the stories of triumph and tragedy for many Olympians. But there was one story that hit home more than the others - the story of skiing legend Bode Miller and the impact of his younger brother's sudden death from a seizure just last year.

It struck me as we watched these games, that the greatest Olympians are those who have mastered what it means to fall down and get back up again. Whether in figure skating, skiing, snowboarding, ice hockey, or speed skating, the road to success has been paved with countless painful falls that leave their bodies bruised and broken. But the victors, the world champions, get back up and try again and again and again.

Such was definitely the case with American alpine skier, Bode Miller, who at 36 was competing in his fifth Olympic games (that's right 20 years). After Bode met with disappointment his first two races in this year's Olympics, he pushed out a performance that enabled him to tie for the bronze medal in the Super-G, making him the oldest Olympian to ever medal in alpine skiing. But the tears he shed following the race appeared to be more for his late younger brother who died from a seizure at the young age of 29. Of course Bode's tears were largely due to the NBC interviewer who seemed to push it too far and has since received much criticism.

Here's a short video about Bode's medal and post race experience.


Honestly, it was pretty difficult for Adrian and I to watch as the media told the story of his little brother Chelone and his untimely death. The young man was an aspiring Olympic snowboarder, an adventure seeker and a bit of a daredevil. He had suffered a traumatic brain injury caused by a dirt bike accident at age 20 and had been plagued with periodic seizures since then. He did not let the seizures get in the way of his love of flying down mountains at speeds of 80+ mph and trying new aerial tricks or of his pursuit to join his brother at the Olympics.

But his young dreams suddenly came to an end when he was found dead of an apparent seizure in April 2013. That was just one month after my husband's last major seizure, the one that prompted us to leave the home we had recently bought in Virginia and move back close to family in Delaware. I don't recall hearing about this story last April, when we were very much in the midst of our struggle with seizures. In fact, I'm glad I didn't hear this story at the time.

Weeks before Chelone's death, I had just witnessed my husband violently shaking on the floor at a car dealership, then watched him fight as they put him in the ambulance, and heard him ask to die as his body and mind endured agonizing pain. Yes, it was all very raw in my heart and mind in April. To hear that a vibrant and otherwise healthy young man had just died from a seizure would have been devastating. I think I can imagine how Bode Miller and his family must have felt upon receiving the news of Chelone's sudden death.

That is the real evil of seizures. Most of the time, you are perfectly fine and healthy, but then they hit like a lightening bolt. With no warning, no notice, they leave you completely impaired and unaware that you are putting yourself in dangerous situations.

It seemed particularly poignant as my research over this past year has led us to the conclusion that Adrian's sudden arrival of seizures in his 30s is a result of a traumatic brain injury he must have sustained as a youth. Traumatic Brain Injury or TBI is basically a result of a bump, blow or jolt to the head that causes damage to the brain, ranging from mild to extreme. While we can't exactly pin-point an incident with Adrian, we can think of several accidents in youthful play that might be the culprit.

Now that we are nearing the one year anniversary since Adrian's last seizure, we are so thankful to be experiencing the peace that we have. And while this news story had us both on edge, it was a reminder to be thankful yet ever cautious.

From what I read, Chelone was not on doctor recommended anti-seizure medications at the time of his death. He could not perform to his level of ability because the meds made him sluggish (Adrian has experienced this for sure!) so he was using natural remedies to try to treat his seizures. While many have suggested we try special diets and herbal remedies, at the end of the day, we have always felt that was too risky and never coincided with neurologists recommendations, so Adrian will continue with his daily medications for the foreseeable future.

While we can imagine the pain of Bode and his family's tragic loss, there is something admirable about the fearless and free spirited way that Chelone seemed to live his life. And congratulations to Bode Miller who persevered through heartache to get back up and fight for one more chance to stand on the Olympic podium.

She wants a Prince...and a baby

Last night as I was giving Adria a bath, I remarked on how tall she is now almost filling up the length of the tub and how I remember giving her a bath when she was just a little baby.

Her response. "Mommy, when I grow up I'm going to have a baby like you. Will that make you happy when your daughter has a baby, so you can have a baby again?"

"Yes, that will make Mommy happy, but that's a looooooooong way away!" I said. Really, I don't want to be thinking about my five year old being a mother...yet. She's not even in kindergarten, and she regularly talks about getting married and having children. I'm so not prepared for this stuff, even if I do find it a bit amusing.

Adria begins her love of babies as she helps mommy give her newborn baby sister a bath
(Dec 2011)

It makes me think of that day when we were sitting in the maternal fetal medicine office after hearing about Adria's diagnosis, and we were learning about spina bifida for the first time. We were trying to grasp what type of life our unborn daughter could expect. They told us that because of the damage to her spinal cord, she would likely have limited sensation from her waist down. I remember being concerned and asking if she would be able to have children. They said it would be possible, in fact one of their patient's was a pregnant woman who had spina bifida. That gave me a measure of peace for my little girl.

Adria regularly asks me questions like, "Mommy, when I grow up will I have a handsome prince like you?" Ah so cute. I do hope so. Though I know the fairy tale dream of a prince that she sees in so many children's books and shows is so very different from the reality.

My Prince with our little princesses.

Yes, I am blessed with a handsome "prince" who treats me well, especially when he's healthy. But I have so many friends who are still hoping and dreaming that there is a man out there for them, while others suffer the heartbreak of love lost, and still many more live daily with a man who frustrates them to pieces.

Indeed on an especially tough day, you might catch me changing the final words in one of the girl's storybooks. For instance instead of the tale of Beauty and the Beast ending with "The Beast transforms back into the Prince, and the two live happily ever after."  I might say something like "...and the two faced many surprises in life and had to work hard to grow in love and support their family."  I know, I know, that takes some magic out of the fairytale, but sometimes it's ok to throw in a reality check. Don't you agree?

Yet, I hold out hope that she'll find a great prince because there are many wonderful mothers I know who are raising young men. Consider this my thank you, mothers of little boys. Thank you for loving on your little men and teaching them the best way you can to be respectful and thoughtful (of course I know it often doesn't seem like they're listening.) Keep at it, and we'll do our best to raise a couple gracious and loving little princesses.

And if your little man does happen to capture my daughter's hand...many, many, many years from now... I have a message for him.

He needs to buy her pearl earrings on their third Christmas together.

She requested this one night as I was putting her down to bed and she commented on my pretty pearl earrings. I told her Daddy gave them to me before she was born. She said, "When I grow up, I want my husband to buy me those earrings on our third Christmas." Duly noted, my dear. I have officially notified some potential future mother-in-laws :)

Oh my dear sweet daughter, I hope and pray that you will one day meet a wonderful prince who loves you tenderly and leads you confidently. And I hope that you'll experience the joy of motherhood.

The Olympic Fantasy

Just like this year’s Winter Olympics in Sochi, the XVIII Olympic Winter Games held in Nagano, Japan opened on my birthday, February 7 in 1998. That was 16 years ago, and it was my 16th birthday. I was still dreaming then but knew that already I was likely too old to be an Olympian.

In fact that year a female U.S. figure skater won the gold at just 15 year old; she was a few months younger than me. Remember Tara Lipinski? That was her only Olympics, but yesterday she was a commentator for the pairs skating which saw the return of Russian dominance. I still remember Tara and Michelle Kwan, Kristi Yamaguchi, and Nancy Kerrigan – all U.S. Olympic figure skaters who won medals during the years I still fantasized.

Indeed it was really just a fantasy. I watched the Olympics as a young girl and held dreams of what it must be like to be an ice skating princess or a gymnastics sensation. Maybe it’s their cute outfits, but for whatever reason those seem to be the most captivating Olympic sports to young girls. And like many around me, I dreamed to be one of them.  However, this dream…this fantasy existed only in my head and was never to be a reality.

At the time I watched those Winter Games in 1998 and was captivated by my peer being an Olympic champion, I had only been ice skating on a rink one time.  At six years old I had taught myself how to do a cartwheel, but the first and only gymnastics class I took was an elective in college. My first skiing experience came after I was married, and my greatest athletic achievement was at 25 years old when I ran a marathon (26.2 miles in case you’re not clear on that grueling distance). There is no specific sport that I have pursued or excelled at over the years, and yet the fantasy remains. The wonder of how grand it must feel to represent your country on the world stage, and if you are so fortunate to come out on top and say in this moment, “I am the BEST in the WORLD!” Oh yes, I still think that sounds exciting. But I know that it is much more than a dream that took them to that podium. It was the relentless pursuit of a goal that involved countless sacrifices I don’t even want to imagine.

With this Olympic fantasy lingering still, I was struck with a touch of sadness as I watched the opening ceremonies on the night of my 32nd birthday. I realized that for the first time when I watch these games, I will be older than probably 90% of the Olympians. My time to plan and prepare had come and gone years before, but now there is a finality to the death of this dream.

So I have been watching these games, paying special attention to the Olympians in their 30s.  It seems for several Americans, age has been a factor in their defeat. Look at snowboarder Shaun White, 27; speed skater Shani Davis, 31; and alpine skier Bode Miller, 36, who all failed to repeat gold or even medal in their favored events at their third Olympic appearances. However, a 40 year old Russian became the oldest athlete to win gold when he clenched the title during the Biatholon Men’s Sprint (a sport I know little about, but they cross-country ski with a gun on their back and periodically shoot at targets…kind of entertaining). The next day a 42 year old Russian earned silver in the Men’s Luge with a 40 year old Italian taking bronze, it’s okay if they were bested by a dominating 24 year old, they both have a long Olympic history. And there’s the 32 year old Dutch speed skater who won gold and now the 30 year old women’s alpine sensation from Slovenia who clenched the first gold for her country when she made history and tied with a 28 year old from Switzerland yesterday.

There are still Olympic champions my age – just not many females and not many Americans so far at these games. And as I’ve watched many surprises unfold at the Olympics these last few days, I am reminded that the Olympic dream comes at such a high price. To be among the elite few that leave the games victorious is a wondrous dream come true, but I imagine the many who go home empty handed are often haunted by their defeat. Is the passionate pursuit worth all the effort? If you love it, then yes I would think that it is.

Last night my five year old sat on my lap watching the pairs skating competition. She wants to go ice skating. She wants to wear a sparkly dress like the “pretty girls” when we go. And she wants Daddy to throw me in the air like the pairs skaters…HAHAHA! It’s special to share an Olympic experience with her showing interest for the first time. She sounds like she’s already forming the Olympic fantasy. But I wonder, for her and her little sister, could it ever be more than a fantasy?  Yes, Adria has some significant limitations but I won’t tell her she can’t try something, and two year old Johanna already exhibits impressive athletic talent. How do I as their mother present them with the right opportunities and encourage them to find a dream that becomes a goal? Time will tell, but their time to start is now. If I had to guess, I think Johanna will prefer something more exciting like snowboarding. Kaitlyn Farrington, 24, and Jamie Anderson, 23, certainly represented the U.S. well with their gold medal performances in snowboarding this week. 

U.S. Olympic figure skater Gracie Gold

 

As I did in my youth, we'll be sure to watch the women's figure skating competition as Gracie Gold, the 18 year old American, hopes to put the U.S. back on the podium after we failed to medal in the sport at the last Olympic games for the first time in decades. She already won bronze in the first ever team competition. Go for Gold, Gracie! Give the young American girls of today an Olympic fantasy.

Today I am 32

I'm 32 today. That'll take some getting used to, but I'm good with it.  It's easier than turning 29 I think! Of course, I did spend that birthday in the ER with emergency surgery but that story is for another time.

My job graciously gives employees the day off for our birthdays, so I had a free Friday. Nice!

 

I enjoyed a family breakfast to get it started and a date down to the beach with my husband tonight. Great book-ends for the day, since I did end up spending several hours working on taxes and going into work for a meeting with a couple who would only be in town today. I was able to squeeze in a little time to surprise Adria at her pre-school in the afternoon too. She was quite excited about the Pajama Party at school today and wore her favorite purple PJs.

This year I am reminded of my blessings as we spent one night this week enjoying a delicious homemade dinner with Adrian's family and then another one with mine to celebrate the February birthdays.

Celebrating at my Mom's house this week, my brother Aaron's birthday is the day after me.

That left my birthday free for a date night with my man. And I wanted to go to the beach. I actually love the Rehoboth boardwalk in February. It's completely empty, such a stark contrast from the masses that would be there on a Friday night in July. The stillness and quiet allowed us to appreciate the gentle crashing of the waves in the moonlight with just the two of us on the beach. Of course, we only enjoyed it for a few minutes because it was cold!

Enjoying the freedom to be crazy on the empty Rehoboth boardwalk!

 

I did have another special moment early in the day when my dad stopped by to give me a birthday card right after breakfast. As a daughter and a mother of daughters, the words of this card touched me deeply and I wanted to share them.

 

Daughter

Even before she arrives, you want your daughter's world to be perfect.

You want her to be happy and surrounded by love.

You want her to be sure of herself, gentle but strong, with nothing to worry about.

 

But real life's not like that. The years come and go, bringing her trials and triumphs, joys and sorrows,

and you still want her world to be perfect.

But you can see that she is sure of herself, surrounded by love, and gentle but strong.

 

And you can see that she is who she is because life has challenged her to grow and become more amazing every year.

 

KEEP MAKING EVERY YEAR YOUR OWN KIND OF BLESSING.

 

 

Beautiful. Thank you, Dad. I know that many of you, Daughters, have had a tough year. I gladly share these words with you that you may find strength and confidence in the midst of what life brings. And I pray that you too can be surrounded by love. I am hopeful that 32 will be a great year!

 

 





Daddy's Home...from EUROPE!

It's just after 9:00 p.m. and the house is quiet except for the clicking of keys on my laptop and the semi-obnoxious hum of the dishwasher.

My husband is usually up with me for a while after the girls go down, but it's been different this week. His body is still operating six hours ahead of time and thinks it's like 3:00 a.m. I suppose 12 days in Europe will do that to an American!

That's right, for the first time in his life, Adrian crossed the Atlantic Ocean and explored a new continent. He has long wanted an adventure like this, and we've often talked about doing it together, but this time his wife was not the woman along for the journey. Two of his sisters were his travel buddies.

Adrian and his sister Leona at the airport in Madrid, ready to explore!

Of course I was a little jealous, but for multiple reasons it would have worked out for me to go along. And I suppose it was fair, since I already had my first European excursion with four friends nearly 12 years ago (wait...has it really been that long?).

How and why did this trip-of-a-lifetime come about, you ask?
Let me break it down for you.

1. Adrian's younger sister is stationed in Spain - Angela is just 2 months younger than me, we grew up close friends, and she joined the Air Force at a young age. She's traveled a great deal, and for the past couple of years she's been living in southern Spain. Adrian's parents and the youngest two of his sisters (he has four little sisters) have already been for a visit. Angie will be reassigned elsewhere this year, so the time for him to go visit was limited.
2. Daddy needed a break - After being cooped up in different houses with almost no social life for the last five years, Adrian was kind of desperate for a break. A true get-away. He deserved it and was willing to risk it since his health seems to be improving with no seizures in more than 10 months now!
3. Mommy's work is going well - My job has been going well the last few months, not super-amazing but I'm selling enough homes to afford him this opportunity.
4. His closest sister was able to join in the fun - Another person who works incredibly hard and deserved a break was Adrian's sister Leona, who is the closest in age to him. This too was her first trip oversees...what an adventure!
5. Bottom Line - The door of opportunity opened and they stepped through it with barely a month's preparation. That's how we try to approach life, seize the moment and don't let great experiences pass us by just because it may not be like we planned.

Adrian and Leona each crammed 12 days worth of belongings in a backpack and flew over to Madrid, Spain on January 19. Angie then guided them through landmarks in Rome, Italy; Barceolona, Spain, and the British owned island of Gibraltar south of Spain. They walked miles and miles through cities rich in history and enjoyed delicious food and a fresh perspective on life as they were briefly immersed in different cultures.

Here are just a few of the 500 pictures he took on the trip. You'll have to come by and see the photo albums to get the full experience.

It really was the trip of a lifetime. Though, now that Adrian has had a taste of it, he's more eager than ever to return and try out Milan and Venice and the Greek islands with his wife at his side :) I like that. Let's hope the housing market continues on it's upward climb!

Yes, I worked hard while he was gone and shuffled our girls between both of our mothers. Oh yeah, and I got to enjoy the bitter cold and snow of this Delaware winter.  But while the girls and I missed him immensely, it was all worth it to hear his stories and see a renewed vigor for life.

Plus, he brought us back some great gifts including adorable little flamenco dresses for his little princesses. What a great Daddy!

Now, if only the return wasn't so tough...He's been surprised at how long it's taking for his body to adjust to the jet lag. And yes, I did breathe a big sigh of relief when I knew his plane had landed safely back in the U.S. and no seizures had tainted this trip.

Keep an expectant look-out for opportunity in your life, sometimes the risk really is worth the reward.