Wish Trip – Day 5

Day 5 was a favorite for everyone.  The boys and I walked down the main strip to Duke’s for breakfast.  Duke’s is one of the places Eddie has been dying to give a try.  It’s namesake was Duke Kahanamoku, the king of surfing and quite the legend in Hawaii.  We headed over for the breakfast buffet served by the ocean.  It’s quite a view.  dukes-breakfast

The breakfast was spectacular….Portuguese and chicken sausages, bacon, eggs, and omelet station, several cereals, yogurt, an abundance of fresh fruit, oatmeal, taro bread pudding, banana pancakes, …. I am salivating just remembering it all.

During breakfast, the waiter took note of our MAW buttons.  While Eddie was going after seconds (or maybe it was thirds), he took the opportunity to ask me about Eddie’s health and Loeys-Dietz Syndrome.  It was pretty cool to get the chance to share just a little more information with others who are unaware of LDS.  The waiter had the manager, Dante, over to our table to personally greet us.  Dante took care of our breakfast and invited us to return to the restaurant for another meal before heading back to NC.  They treated us like royalty.

We then traveled about 30 minutes away from Waikiki to Kualoa Ranch.  This is the site of some adventures such as ziplining, horseback riding, and our option….ATVs.  It is also a working cattle ranch and a common location for movies and television shows to be filmed.  For more information on Kualoa Ranch, simply click here.

One of the things Eddie most wanted to do in Hawaii was drive a jeep through the jungle/rain forest.  That wasn’t possible, but this was pretty close.  They had individual ATVs, but the ranch hooked us up with a Raptor vehicle which is a cross between an ATV and a jeep.  It holds 4 people.  You had to be 16 to ride and 25 to drive.  The company was already breaking its own rules by allowing Deacon and Eddie to ride.  We spoke to the manager, Lani, and explained that Eddie’s wish was really to drive the vehicle.  She explained they would have Eddie drive through a practice loop, have us sign off on liability sheets, but they wanted to make his wish happen so they would allow it.

As we were off to get a safety briefing and get our helmets, Lani then hugged me and asked me about Eddie’s health.  It was such a sweet and kind moment that really moved me.  It also gave me another opportunity to share about Loeys-Dietz Syndrome which was an added bonus.  Then we were off.

raptor

We enjoyed the hour long tour by some of the most idyllic settings on Earth.  We marveled at the signs telling us about which movies were shot here and there.  Eddie managed to hit every mud hole on the trail, also, leaving us spotted, dirty, and laughing.  We did stop at two points along the way for pictures including where this “log” scene from Jurassic Park happened:

jurassic-park-34-a-flock-of-gallimimuses

And here we are getting our picture taken around the log on our tour yesterday:

jurassic-park

Kualoa Ranch then sent us on our way with a complimentary picture from our adventure and we returned to the hotel.  Eddie and I went out for sushi while Rick and Deacon hit up the local Subway.

Another great day in the books.

 

Wish Trip – Day 4

I just don’t know where the time is going.  Last week when counting down the days to our trip, each day seemed like an eternity.  Now that we are here, each hour seems to fly by.

Yesterday was a free day of sorts for us as Make a Wish had no activities prearranged for us.  It’s nice to have a mix of scheduled activities and free days.  Eddie and I had decided the night before we would head over to Diamond Head to have a sunrise hike.  We set the alarm for 5 am and made our way early.  The park’s gates open at 6 am and we were parked and starting out by 6:15 am.

It was a challenging trek for a number of reasons not the least of which was we were in the dark.  It was pitch dark when we started.  A few other hikers had glow sticks or were using the flashlight on their phones.  We did not.  The first portion of the hike is on even concrete paths.  And then as you make your way up the crater side the path gets more narrow, rocky, and uneven.  There are scenic spots along the way for picture opportunities and breathtaking views.  We were able to stop and enjoy the myriad of colors in the sky as the sun came up.  sunrise

The last portion of the hike is a climb up some intense stairs.  There are lots of steps, but the challenging part is because of how steep they are.  diamond-head

Then just as you are dying to catch your breath, you turn a corner to see another staircase: this one a spiral.diamond-head-stairs-photo_1002629-770tall But finally, you emerge at the pinnacle and the views are totally worthwhile.  And the best part was sharing it with Eddie.

mom-and-eddie

After we finished our hike, we met the rest of the gang for breakfast at McDonalds….Deacon’s request.  While everyone else ordered the usual biscuits, breakfast meats, and pancakes, I decided to try out more local fare.  My friend, Shannon, had been stationed here when she served in the military and she shared the McDonalds serves spam, eggs, and rice for breakfast.  So when in Rome…..

That was gross.  End of story.

After breakfast, Eddie wanted to take a turn at the zoo and to get in a trip to the Waikiki Aquarium.  Just as they did with Deacon the day before, Eddie was escorted to the gift shop to choose a donated stuffed animal.  He picked a turtle donated from a couple in Washington state.  We viewed giraffes, birds, and our favorites, the spider monkeys, to name a few.  We then walked a couple blocks down to the aquarium.  It was a small aquarium but something fun for us to do together.  We were particularly interested in learning about sea life indigenous to Hawaii and Polynesia.  As guests enter the aquarium, volunteers take pictures of your party.  On your way out you pass by the stand to view and purchase pictures.  Seeing our Make a Wish buttons, the manager bundled all our pictures together and gave them to us as a gift.  It was an awesome gesture.

Finally we returned to the room where Eddie was able to watch his beloved Demon Deacons win the Military Bowl.  We then get dressed in beach attire and finished the day enjoying the sea and the surf.

It was another phenomenal day.

 

Wish Trip – Day 3

Day 3 started with breakfast at a local place, Teddy’s.  There was nothing really unique about our choices to eat….bacon, potatoes, breakfast burrito, pancakes.  After breakfast Rick and I divided and conquered with the boys.

Make a Wish had arranged for a tee time and golf club rental at the Royal Hawaiian Golf Club here on Oahu for Rick and Eddie per Eddie’s request.  This course was designed by Arnold Palmer.  (You can click here to go to their website)  Eddie had an amazing round shooting an 83.  He said the weather and conditions were perfect.maw-golf

While Rick and Eddie were enjoying a day of golf, Deacon and I went to the Honolulu Zoo.  The zoo is located one block over from our hotel.  Robin and Liz, our wish grantors, explained that we needed to wear our Make A Wish buttons everywhere we go whil on our trip.  This came in handy because as we approached the entrance,  zoo employees spotted our buttons and whisked us through saying our visit was complimentary.  Then they took us to the back corner of the gift shop where a bin of stuffed animals were located.  Above the bin were a number of Make A Wish posters.  The gift shop manager explained that guests to the zoo are invited to purchase stuffed animals to donate to the bin and each MAW child gets to choose an animal to take home as their souvenir.  Deacon gladly chose a monkey to take with him donated by a couple from California.

Deacon and I spotted lions, elephants, and a myriad of birds before seeing the playground.  That was it.  Deacon played on the playground until he was almost too tired to keep his eyes open.  Then he asked if we could go back to the hotel room because he was tired.  We spent the majority of the day watching television with the occasional walk down the block for ice cream or lunch.  I hated to spend a day inside, but no day is wasted if I’m spending it with those I love and Deacon definitely fits that description.  This time change has really done a number on him and he needed a day to rest so that’s what he got.

After Rick and Eddie returned, Deacon rested with Rick while Eddie and I took a walk along the beach.  It was nice to be able to have some individual time with each child.  Then we went to bed early (before 10 pm) as Eddie and I had plans to take a sunrise hike at Diamond Head.  But that’s an entry for tomorrow……

Wish Trip – Days 1 and 2

A chauffeured SUV arrived at our home at 5:00 am Saturday morning to drive us to the airport and send us off on Eddie’s wish trip to Hawaii.  Our plane left Charlotte and about three and a half hours later landed in Denver.  Eddie has been on a number of flights, but it never gets old for him.  Deacon traveled on the plane to Baltimore for doctor’s appointments when he was just a few months old, but obviously, he has no recollection of this.  Therefore, this was practically a first flight for him.

We arrived in Denver for a fairly quick layover.  We had just enough time to grab some lunch before boarding the next plane for a seven hour flight to Honolulu.  The flight attendants saw Eddie wearing his Make a Wish shirt and gave him a snack box for the trip. Thankfully, Deacon and I dozed for a good bit of that long flight.  We arrived in Honolulu around 4:30 local time which meant 9:30 at home.  Because we were seated in the middle aisle of the plane without a window view, our first good look at the Hawaiian landscape was once we stepped out of the airport.  I could never have imagined such beauty.  I’ve been beyond blessed in my lifetime to see a good number of places, but nothing could compare to the picturesque nature of the rocky mountains next to sandy beaches with the clear blue sea.  All of us were blown away.

After claiming our luggage and our rental car, we made our way to Waikiki.  Our hotel, the Aston, is close to the beach, restaurants, shops, and so many attractions.  It makes it so easy to walk to anything.  Every room in the hotel has a balcony.  After checking in we made our way to a restaurant downstairs, Tiki Grill, for dinner.  Eddie and his dad took a walk on the beach, but Deacon and I went back to the room to go to bed as our bodies were screaming for sleep.  It may have been just 8:30 pm here, but our bodies felt as if it were closer to 2 am.

Sunday….Christmas Day.  It didn’t feel like Christmas Day….maybe because of the 80 degree weather or maybe because of the constant activity.  All the businesses along this famous strip of beach were open and engaging in regular business.  We went to a local establishment called Eggs and Things for breakfast.  We wanted to enjoy things local and unique to Hawaii.  A pancake with coconut syrup, omelet with local produce including zucchini, a grilled porkchop with fresh pineapple, and kona coffee.  Delicious.

Then we headed to the beach.  The strip of sand was not as wide as I anticipated, but the sand was unbelievably soft.  The water was so clear.  I rented an umbrella and beach chairs. Eddie really wanted to paddle board so we rented one for an hour.  One huge difference between the beaches I’ve visited in the Atlantic and this one is the ocean bottom is not sandy.  It’s rocks.  Sharp rocks with sea urchins in some places.   The water was cool and although the temperature was in the low 80s, it was so comfortable with a constant breeze.  Not too hot and not too cool.  The humidity also was a perfect level.  It was the most incredible weather.

We returned to the hotel after a couple of hours, took showers, had lunch, and then prepared to head to a luau.  Make a Wish planned a number of activities for us including this luau called The Chief’s Luau which is held inside of a park much like a small Seaworld.

At the luau, there was spear throwing, poi tasting,  local craft selling, and headband making.  We all enjoyed a variety of these activities.  Because our reservation was secured through Make a Wish, we were treated like royalty.  We sat in the VIP section for the show in front of the stage.  The food was a smorgasbord of local entrees.  Pork, chicken, some incredible fish, fresh pineapple, pineapple cake, rice….the list could go on and on.  There was unlimited fruit punch, water, hot tea, and coffee and sodas, wine, beer, and cocktails were available at the Tiki bar.

The emcee for the luau was an incredible showman with a great sense of humor and musical talent.  They shared some information on the culture as well as traditional dances of the Polynesian islands including Samoa, Tonga, Tunisia, and of course, Hawaii.  Near the end of the show, they invited Eddie to the stage and offered a Hawaiian blessing for good health and long life for him and gave him a number of gifts including a ukulele which he was thrilled about.  Interestingly, Eddie was ambivalent about the idea of attending a luau until we arrived.  He smiled and laughed and hula-ed throughout the show.  It’s been a long time since I’ve seen him that relaxed and enjoying himself.  Obviously, this is exactly the purpose of Make a Wish.

How blessed we are.

 

When You Wish….

I shared a while back about the good news that Eddie was being granted a wish by the Make A Wish Foundation.  We will be spending our holidays in Hawaii as requested by Eddie.  The entire process has been an amazing one.  We have gotten to know our wish granters who are volunteers.  They have walked us through the process and been expert confidantes, encouragers, and troubleshooters along the way.  It was been nothing but one surprise after the next with MAW….from barging into Eddie’s classroom to give him the news he would be spending Christmas in Hawaii (with the help of the Wake Forest baseball team and coaching staff!) to a send-off party hosted by Polo Ralph Lauren.  No details are overlooked.

I plan on blogging while in Paradise.  I can only imagine what amazing adventures we will get into.

Kindness in Action

So the past year has been hard in America.  And it all came to a climactic ending last night with the election results.  For months I have been concerned about the state of people and minds and hearts when the results were announced…..regardless of winners and regardless of which race.  This election had so much passion and apathy, encouragement and animosity, rhetoric and action that I felt whiplash as we swung from one rally to the next debate from one advertisement to the next soundbite.  It was tough.  I’m tired.  Regardless of winners and regardless of which race.

I live in NC so the gubernatorial and congressional races felt just as intense.  I was worried….still am, to tell the truth.  But I have found comfort in what I’ve seen today.

I am a high school teacher and I have witnessed kindness in action numerous times before lunch time.  I am encouraged.

This morning I have seen students dressed in their ROTC uniforms carrying themselves with the pride and patriotism of soldiers past and present.  I am encouraged to watch students stand and proudly place their hands over their hearts to recite the Pledge of Allegiance at the beginning of the school day.  Contrary to memes and wild posts on social media, we still say the pledge at school daily. Patriotism is not dead, my friends.  It may be redesigned for a modern day generation, but it is not dead.

I smile as I see multiracial friendships in the cafeteria, courtyard, and break.  True friendships.  The students banter back and forth, give high fives, and provide pats on the back with little to no regard for skin color or birthplace.  Racial divisions may be exploding in cities and on social media, but not on my campus.

I beam with pride as I see students that have Trump bumper stickers, hats, and other items speak kindly and share smiles with those who do not.  Those who would not.  Partisan politics may be rampant in polls and the news, but not among our young people.

I dance on the inside as a young man holds the door for me.  I see young ladies being spoken to with respect.  I see young men and women who choose to be countercultural in their fashion and self expression.  Misogyny and bullying may be viewed as ubiquitous in our society, but it is not found this morning at my school.

I may be concerned about the state of our nation, but I am encouraged today as I watch our future finding ways to navigate differences and learn to appreciate each other and be friends.  I am encouraged by the kindness I see displayed by my students.  I see kindness in action and I am inspired to join it.  I hope you will be also.

This is not about Trump

This is not a post about Trump.  However, that’s where we have to begin.  You see, since news came out of his taped conversation with Billy Bush some 11 years ago, it’s all I’ve seen on social media.  It’s nearly monopolized my brain, in fact.  Which kind of pisses me off.  I want to stop thinking about it, but I’m just so angry.  Am I angry that Trump talked about women as if they are another property that can be managed, traded, upgraded, and acquired like some hostile takeover?  Yes, I am, but the more I think about it, I’m not really as angry towards Trump as much as I am at the rest of us.  Even myself.  You see, this isn’t an indictment on Trump as much as it is on our culture.  In fact, this is true for nearly every offensive thing Trump says or does.

I think this says as much about the American consciousness about women as it does about the man who said it.  Maybe more so.  If you don’t believe gender inequality is real, we only need to look at how it plays out in our society everyday.  And I’m not talking about abortion or women politicians or equal pay or any of those things.  This is much less obvious.  It’s much more entrenched.

It’s our language and our excuses.  Let’s be clear, this isn’t an issue solely at the feet of Republicans.  Democrats have had their fair share of condescending, gender biased, chauvinistic actions and words. And that is exactly the point.  There have been scandals a plenty.

I’ve heard the term “rape culture” more often in the last 48 hours than I have in the past two years combined, but it’s true.  And on a more widespread scale, we have a clear patriarchal culture.  Equality in our society is a myth.  You need only look to the reactions of this one news story.  Headlines and internet comments include such statements as “lewd comments”, “mean words”, “locker room talk.”  No.  That’s not what this is.  This goes far beyond such innocuous labels.

In the actual recording Trump says, “You know, I’m automatically attracted to beautiful (women)— I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait. And when you’re a star, they let you do it. You can do anything.”  Out of all the many things he said, this is the one in the conversation I find the most revolting.  It’s not the vulgar language.  I can handle that.  This is what makes me come unglued.

This speaks to a mentality of entitlement.  This speaks to a mindset of violating first, asking questions later.  And we pardon it with “locker room talk”.  As if any woman saying no is simply playing hard to get.  This speaks to the very same mindset that Brock Turner demonstrated when he sexually assaulted a woman behind a dumpster in January 2015.

“I just start kissing them. It’s like a magnet. Just kiss. I don’t even wait. And when you’re a star, they let you do it. You can do anything.”

Turner was a swimming star…..an Olympic hopeful.  And he served 3 months of a 6 month sentence.  And we feigned outrage then went on about our business.  And now it’s “mean words” and “locker room talk.”  It’s “boys being boys.”

And please understand….again, this is not about Trump and whether or not he is fit to be president.  I will say again, this is not a lynching of Republicans or because I’m a “bleeding heart liberal.” I am well aware of Bill Clinton’s lack of moral fortitude. I know there were plenty of sexual misconduct, and, yes, rape allegations.  I do not defend it. I do not minimize it. Deplorable.  Every allegation deplorable.  Every incident enraging.

I am, however, astonished at how his behaviors have now been shifted to place blame on his wife.  The numbers of people who have emerged and decried Hillary denouncing this recording because of her marriage astonishes me.  We have heard jokes about how his sexual misconduct is because she couldn’t “satisfy him” and memes of how his aging appearance is due to living with her.  We say it is a double standard for her to call out this recording or any of Trump’s rumored philandering ways because of her own marriage.  Somehow we have taken Bill’s exploits and removed his responsibility for such and placed them on the shoulders of the wife.  There may be many, many, many things we could criticize about Hillary.  How I long for the days of debates regarding Benghazi and emails, but a wife should never have to answer for or own the responsibility of a husband’s cheating.  (And just for the record…. I believe if the wife cheats, the same should be said regarding blaming her husband.)

If this is, in fact, locker room talk, than it still cannot be defended.  That is the equivalent of using racist epithets, but saying it’s okay because you were only in a room of white people.

We live in a society where young ladies are still taught that they have to be careful of what they wear as if men are simply helpless to resist the sorcery that is the female body.  The media analyzes the clothing choices of female candidates without ever doing the same for male candidates.   When a woman is sexually violated we often find the conversation leaning to whether or not she was intoxicated or if she “led him on.”  Girls have their butts grabbed and we shake our finger at the boys that do it as if that’s a clear statement of disapproval.  We tell young girls if a young boy calls you names or hits you then it’s because “he must like you.”  And then when we try to speak up about how this is unequivocally wrong, we are told the world has just gotten too caught up in political correctness or that we’re too sensitive or emotional.

If you want to vote for Trump, go ahead.  I’m not trying to change your mind.  I can understand if one was concerned about the economy, one might look to a business tycoon for the answer.  Certainly there are well-crafted arguments to explain your vote.

However, I will ask that when you speak of this recording do not dismiss it or try to be a volunteer spin doctor by starting with any kind of “but” statement…..”but Bill Clinton has done much worse….”, “but Hillary hates women too”.  The variations are endless.  And please, most of all, do not say, “let’s move on to the issues that really matter.”  Sexual assault and the objectification of women is an issue that really matters.

Let’s just start with this was terrible and awful and perpetuates a rape culture and women’s victimization.  And let’s examine our own jokes and posts and visceral reactions and make sure we do not propel such a society.  Trust me, this isn’t about Trump.  It’s much bigger than that.  After all our elected leaders and our politics are merely a reflection of what we allow.

 

Closing Time

When we first received our itinerary for this trip, it seemed so low key compared to our last NIH trip.  Each day’s last appointment was set for 1 or 1:30.  However, things didn’t exactly turn out that way.

We take a shuttle from the NIH to our hotel.  It’s a 15 to 20 minute ride on the shuttle.  Monday we arrived back at the hotel around 5.  Eh….not too bad.  Last night, we had to travel back from Hopkins which is about a 45 minute- an hour drive.  The ophthalmologist came in after clinic hours to examine Rick and Eddie.  Therefore, that exam didn’t even begin until 6 pm.  We got back to the hotel around 9 pm.  Today, we closed down the NIH Allergy and Immunology Clinic.  In fact, we had to move into the Day Hospital to finish everything because the clinic closed.

It was a nutty day.  After vitals, Eddie spent the morning getting pictures take.  He had a DEXA scan and xrays to check his bones.  Dr. Boyce, the endocrinologist was happy with the scans compared to last year.  There seems to be stability.  His vertebra look good and there is no compression which is a concern in LDS patients.  Additionally, his bone density is on the lower normal to mild low range in most places.  The most concerning area are his wrists.  His bone density is below average.  She recommends he increase his intake of Vitamin D and calcium through supplements and diet choices.

Then we had the wrap up with Dr. Pam and the team.  Out of all of Eddie’s blood work, the only concern an antibody that is tied to a strong immune system was below normal.  She wants our local pediatrician to repeat the blood test to make sure it is stable.  She suspects it will be since he does not have lots of illnesses and infections.

Rick had a much more hectic day.  They added hematology to his schedule after his lab work looked a bit irregular.  Doctors suspect his body is overproducing a protein which has the potential to cause complications if not addressed.  However, it appears to be easy to treat.  He needs to return in the future for more testing to be done and to confirm this diagnosis.  At this point, there is no indication it is related to the LDS.  So bizarre.

Our return is likely the end of the month.  Rick needs those tests and Eddie needs to return to dental.  Eddie definitely will be returning in six months, however,

 

A Welcome First

Eddie had his first echocardiogram at 2 years old.  His aortic root showed an enlargement in that first echo that set us on a trajectory of this Loeys-Dietz life.  He has echos every six months to check that dilation in his aorta.  When it hits 4 cm, he will have surgery to repair it.

Eddie is now 15 so he has had well over 20 echos.  Yesterday was a first for all of them….a very welcome first.  For the very first time he has absolutely no growth in his aorta.  Zero.  No change whatsoever.  Nada.  None.  A good appointment for us has been marked by minimal growth….perhaps two mm, but none?!  That has never happened with Eddie.

This was a very good day.

Eddie also saw an opthamalogist….a corneal specialist, specifically.  Rick had a concerning finding at his last eye appointment which the team at NIH thought might be LDS-related so they arranged this appointment at Hopkins.  All was well, thankfully, but the doctor wanted to see Eddie, too, as he wants to learn more about LDS.  Everything looked great.

Today is our last day of appointments.  Eddie has scans, xrays, and endocrinology.  Rick has a number of appointments, too….I think biofeedback, allergy, and hematology.  Hoping we are able to actually get back to the room before 5 so we can relax this evening.  Eddie is hoping his daddy takes him on the metro into DC for some exploring.

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