3 Years In-- Still Finding Joy

The past May marked our 3 year journey with the knowledge of Jason's M.S, the disease with a million heads.  Our journey has been remarkably different than others who share this diagnosis, and yet similar to others.  I say "our" journey, although, only one of us feels the physical effects of the disease at this point, it is still OUR journey.  Living with a known unknown will always impact the choices we make and it makes us extremely grateful for the measure of grace Jason has been given and the health that he currently experiences.
I tend to avoid the M.S. magazines that are sent as "encouragement" for M.S. patients because frankly it speaks of times to come. Times we don't want to come and we don't know when or if they will. I decided to read this issue since May is a milestone of sorts.    I read "encouraging" articles about all the help that is available to those with mobility limitations (1/3 of M.S. patients report using a mobility aid for walking) or ways to continue to be intimate (with 70-90% of  males with M.S. experience dysfunction at some point), or computer programs that provide aid for spoken communication when language is impacted, or the basic necessities of a handicapped accessible home, (are you encouraged yet...I'm only have done with the magazine!), or the fact that our marriage has a higher probability of ending in divorce because of the trials of being a caregiver to a partner (so we should consider marriage counseling according to pg 28), or tips for bladder and bowel control issues and spouses who serve as caretakers and get to help manage these issues, just to name a few scenarios.

I will likely not pick up another issue for awhile, because, well...it's depressing.  And motivating.
We live with the knowledge that we are at the mercy of this disease and only by God's grace will we persevere with joy.   We live with the knowledge life isn't fair and we watch another friend's disease progress rapidly, leaving her with many physical challenges, including the addition of a wheelchair to her mobility repertoire.  And yet this many headed monster of a disease remains largely in check for Jason.  Muscle pain and fatigue continue to be his biggest battles...and if those are the battles we are to fight, then I'd pick those any day over the ones listed in the magazine that we get to look forward to fighting...And he is oh so much better than he was 3 years ago, thanks to Vitamin D and a gluten free diet...we'll assume the shot he takes 3 times a week does something too.

In the mean time, Jason's pursuit of challenge in an effort to "one up" M.S.continues...
On this year's ticket this June:

• TOMROV "Tour of the Mississippi River Valley" = 185 miles of  constant altitude change in 2 day
• RAIL- "Ride Across Illinois"= 180 miles from Moline to Chicago in ONE Day!!! (His new challenge for the year...He's crazy!!!)
• MS 150 in De Kalb, Illinois= 150 miles (Which he always takes the extend routes to make it closer to 200 miles in 2 days.

Callie and Jason after the ride-2015

 Although I am not always joyful about the inconveniences of having a spouse that needs to train a lot to a reach these goals, I am ultimately grateful he can set these goals and be successful.  It means that these girls can proudly ride the last leg of the race with their Dad who sports an "I ride with M.S." jersey.

M.S. 150 ride  in 2015....2016's ride is still coming

 Sometimes it means the girls and I need to stop and smell the flowers (literally and figuratively), then we all keep on going with the journey.

Finishing up a double century with his little ladies-2015

Life isn't fair, but it could be so much worse, so for now, we will enjoy the relative health and normalcy our lives have returned to after those awful words 3 year ago.  Ride on!

The Final Week-Tuesday

Monday was a day to hang out in Santiago, get a few groceries, do homework and take a nap.  The temperature is normally in the low 90's at this time of year and full sun.   The overcast days and high 70's were cool for swimming, but perfect for exploring.
Tuesday I woke up not feeling well and almost cancelled our touring plans, but decided I would push through it and go.

Turistik has a Hop On-Hop Off tour of Santiago that I thought would give us a good idea of the city and take us to some of the places that stand out in Santiago.  

Callie was super excited to have her first experience riding a bus...any bus...and this one happened to be a double decker!  

 

 The Grand Torre Costernara Center is the tallest building in South America.   

 Parque Metropolitano was the first time we hopped off.   They had city zoo here, which a taxi driver later told me "No muy lindo!"  He was not proud of it's beauty, but had several other recommendations.   But let's back up.
So, the girls begged to go to the zoologico.   A few things to note... the dog.  I don't think I've talked about the dogs yet.  Puerto Rico has a stray cat problem.  Chile has a stray dog problem.  I guess we never had any problems with the strays, other than a lot of barking at night.  As in this picture, they could be found sleeping, walking, playing, all over town.  Since many restaurants have outdoor seating, it was not uncommon for dogs to make their rounds through the dining area.

Dog + pigeon =typical park

 The girls enjoyed the zoo, even though many exhibits were empty and the animals looked like they would rather be dead....and some looked close.  The views above the city were great and we'll chalk it up to another experience. 

Just ask the girls how camels chew.

Another overcast day...Strange

 San Cristobal Hill would have been interesting to me, but we had to keep moving.  Jason biked up it earlier in his stay. It provides an excellent overlook for the city and has a famous statue of the Virgin Mary.   It also has the longest funicular (cable car) in South America to take us to the top...This is the start.  We almost took the ride, but needed to catch our bus.

Madelyn was very interested in the castle as they are studying medieval history.  There were plenty of opportunities to buy from these little stands.  The girls favorites...popsicles.  For 300 pesos (less than $0.50) I was glad to oblige.

 The rest of the tour involved so much exquisite architecture.   Passing by beautiful museums, government buildings, and churches made me wish we had a few more hours to investigate on the tour.

Museum of Fine Arts-

The Cathedral de Santiago
I would have loved to take pictures of the interior as it was ornate, but I wanted to respect those worshipping!  I was able to introduce the girls to holy water, confessionals, and the tombs of several saints important to the Chilean people.  The girls were interested in the flowers left on the tombs and the kneeling benches. Madelyn was trying to figure out if the people were praying to God or to the saints we saw. She asked several times if we all prayed to the same God. It was a good time of discussion, though brief.

 Plaza De La Constitution- This is the equivalent to our "White House."   Although Congress meets elsewhere, I believe the President of Chile does reside here. 



I forget the significance of this building, but it boarders the "White House" and looked cool.

 This is the other side of the Plaza de la Constiticion.  This was about the only permanent "gate" keeping people out of the lawn.  Although security was present and visible, access would be fairly easy.

The guards

The security gates preventing access to the front lawn of the "White House."

We hopped on the bus after this stop and headed back as we had run out of time to explore.  I had not felt well all day, but being on top of the bus, winding through the city in rush hour traffic, and inhaling the fumes made for a long last hour.  In fact, I became quite sick (virus sick +motion sick) and hardly made it off the bus at our final destination before throwing up in the bushes.  I was bit embarrassed. Maddy was grossed out and Callie, well matter-a-fact.  She just wanted to know what I had eaten. 
I had promised the girls a taxi ride home, but didn't think I'd better get in another vehicle so we walked the 25-30 minute walk back home, with a few stops.   Let's just say we were all glad to be back to the apartment!
By the end of the night, Madelyn had thrown up too.  Jason stayed home from work on Wednesday with fever, fatigue, and body aches and Callie somehow avoided all sickness again!  I'm not sure how. She doesn't eat fruits and vegetables, stole drinks from all of our water bottles, and eats things off the floor of places she shouldn't be eating from and swims when it is way too cold!  She is lucky to have an excellent immune system!  
Our adventures in Chile are nearly over, but we have a few more to share.

Weekends- Sunday afternoon

Valpraiso is a port town with 36 beaches, none of which are swimmable and only 7 that are accessible from land.   We headed north out of town and came across Renaca.  We were drawn by the huge waves crashing on the shore.  This was not a good swimming beach. In fact, there were life guards and coast guards monitoring the beach to ensure beach dwellers didn't go off shore.  The beach dropped off quickly, creating huge waves and strong currents that could easily sweep a swimmer away. 

The air was salty and the roar of the crashing waves was a wonderful introduction to the Pacific coast of Chile.

Callie is holding her nose as she acclimates to the salty, fishy smell of the ocean. 

 The waves came in so fast and hard, the surf was unpredictable and caught many on-lookers off guard.  Maddy learned the hard way that the waves take the sand away from your feet, she turned to run so she didn't get wet (since she had chosen to stay clothed instead of suited like her sister) and found herself drenched.  It was comical but she was horrified.

 I loved watching the waves crash over these rocks. Of course, this picture doesn't do justice to the power displayed as the water ramped up and exploded up on these rocks.  Impressive and majestic. 

Looking back at Valpraiso...A coastline with beach goers dancing in the surf, awaiting the next rolling wave.

 I really wanted to climb on the rocks...but, I didn't want to get wet and I'm pretty sure the coast guard would have whistled at me...so being a good little girl, I got as close as I could safely.

 Since Renaco was not a great swimming beach,  we decided to drive a little farther north to Vina Del Mar.  Vina is a considered one of the ritziest beach towns in Chile and known as the garden town. The president of Chile has a summer home here and it is known for its fancy hotels, restaurants, high class shopping, and long stretches of beaches.  It was a stark contrast to Valpraiso with its well kept buildings, delightful gardens, and manicured beach fronts.
Clearly, the beach dropped off steeply here as you can see the waves break about 20 meters from shore, so we struck out on a good swimming beach again.  None the less, it was great fun.  The secondary waves rolled in and made for some exciting dashes to evade being knocked over.  Jason and I weren't able to find a great place to change and the day wasn't terribly warm, so we enjoyed the view and let the girls play in the surf.  

Callie giggled for hours running out from the waves. They never really were in any deeper than their knees.
 

Whew! That was a great wave!  Victory!
 

One happy girl...though I think this is back at Renaco...

Only once did a wave catch Callie off guard and knocked her over, making her feel out of control because she couldn't get back up.  She was never in real danger, but another swimmer helped her up.  She was scared and needed a Daddy snuggle, which he was glad to give.

I enjoyed my view

 Maddy got sick of the salt spray, so decided wave running was not her thing and decided to build an elaborate sand castle. Now the castle itself is not so elaborate, due to the lack of tools, but she is studying medieval history and just had a lesson on castles.

 This castle was equipped with a mote, a wall, a courtyard, and a secondary wall for safety.  She built several channels for the water to come in and around and go back out, in an effort to protect her castle from enemy invasion...including surf enemies.



She was happy when the waves came up high and would fill parts of her mote, then she would rebuild the walls at the bottom to prepare for the next wave

Thanks for the trip to the beach.

 At about 8pm, typical Chilean suppertime, we discovered this restaurant on the ocean front. This was by far the best meal I had in our 3 weeks in Chile. The girls were entertained by a painted sculpture man.  He reminded me of my trip to New Orleans.  They were mesmerized by him, so he earned himself some pesos.

 What we gringos didn't realize is that when a good portion of Santiago goes to Valapraiso/Vina Del Mar for the weekend, they seem to all travel back after supper (10:00ish) and there is only one road to get there and back.  We left Vina Del Mar about 10:30pm and finally arrived home about 1:15am.  This trip was less than 100 km and speed limits were between 80-120km... We sometimes broke 40km/h...you do the math.  It was a long, long slow drive.

 Pictured here are another set of tolls.  Major roads are in excellent condition, largely due to the tremendous number of tolls, ranging in cost from 2.100 to 2.800 pesos (Between $3-$4/each toll).  This is the mass of vehicles at about midnight trying to go through these tolls and get back to the two east bound lanes on the other side.  At least they had 11 toll lanes open.

Monday morning came very quickly for Jason, who had to go to work, poor guy.  

Weekends- Sunday morning

Finding a church to worship proved to be a challenge.  The churches in Santiago are primarily Episcopalian or Catholic, entirely Spanish services and most we found the buildings were extremely secured, not very welcoming to foreign guests.  We opted for driving to the ocean to show the girls more of God's good creation. After waking up to the sound of rain, an unusual sound during these months, we headed to the shore in hopes of a clear afternoon.  Valapraiso is a 75 minute drive from Santiago and is the largest and most important port city in Chile.  The drive was beautiful with rolling foothills filled with orchards and vineyards.   

Noteworthy were the colorful houses upon colorful houses, built into the rocky cliffs and rolling hills that met the ocean.  Upon arrival we came upon blocks of tents and tarps set out for selling items...anything that could be salvaged and sold.  Shoes, clothes, food items, jewelry, purses; some homemade or new, but most warn...Anything that could earn a dime or should I say a 100 pesos.   From the looks of the people and their wares, this was a way of life for many of the residents of Valpraiso.

 

 

 We finally secured a parking spot (that was an adventure, which included marking a map and taking pictures of surrounding buildings and road signs in hopes we could re-locate our vehicle later).  I'm really not sure how to best describe Valapraiso.  At least the part we were in...It looked like many buildings were vacant. Graffiti covered the bottom floor of nearly every building.  It smelled and we had difficulty finding all of these restaurants the brochures were talking about. (Check this site out if your interested:  Valpraiso Tourism
If you looked above the graffiti, the architecture of the buildings was really exquisite. I'm certain Valparaiso was a magnificent town in it's prime and it's history significantly influenced by Europe explorers.  Even though Santiago is the capital city of Chile, Valapraiso houses the Chilean Congress.

The harbor area was interesting and the girls even found a dead jellyfish in the water. Yes, that was a highlight for them. 

 We took the "ascensor" up the hill for the best view of the harbor and surrounding town.  Let's just say, I'm glad we made it to the top and back down safely.

 The view from the top was interesting and gave us a good view of  the harbor and this town nestled into the hillside...There is a lot of humanity tucked into this real estate!

A fuzzy look at the other ascensor on the other rail.

A very impressive number of cargo crates ready to ship

 Valpraiso and Vina del Mar (Wine by the Sea), are important tourist areas for both foreigners (especially Argentinians) or locals.  For the 7 million residents of Santiago, this is an important vacation destination to escape the big city.   Apparently they all travel home at 11pm on Sunday evening as well...more on that later.  These souvenir stands are found all over town. The girls each picked out something to remember the trip with.  You'll have to ask them to show you their prized possession.

 Just some of the graffiti that helped make this town colorful.

 We finally found a diner.  Maddy dug into her cheese empanada.  Oh, I almost forgot to mention. Notice the bottle of water.  If you ever travel to Chile, be prepared to order your water "con gas" or "sin gas."  Chileans tend to prefer their water "with gas."  We preferred "sin gas", without the gas.  Aqua con gas tasted a lot like sprite without the sweetener, which we didn't find very refreshing.

 Madelyn's new family joke after anyone passes gas..."Mom, did you give*name* con gas?!"

One of several memorial statutes dating back to the colonization of this part of Chile.



I'm actually not sure what this building is, but there was a growing showcase of cars in front of it that made me wonder if we were on the set of "The Fast and the Furious."

Honestly, we felt a half day was plenty for us in Valpraiso. I'm sure there was much more we could have learned about the history and culture or different parts of the town we could have explored, but the ocean beach was summoning us on this beautiful day!

After a late lunch, we did manage to re-locate our vehicle and we headed to Vina del Mar!  Next post-DeBruin girls meet the Pacific Ocean.