Take a moment to enjoy CHRISTmas

Alonzo distributes gifts

A thankful child receives his gift!

A vicious disease is no match for the human spirit.

The disease may tear a body apart.

It may extinguish a life that’s just begun. Or a life that’s seen a thousand sunsets.

But it will never extinguish the human capacity for kindness, or a child’s smile, or a parent’s undying love.

Santiago distributes gifts

Santiago distributing gifts

Anyone suffering from cancer, I believe, has the right to be angry. To ask the question, “why me?”

And although cancer is beatable, it is an unfair battle.

The medicines and treatments doctors use have the potential to do serious damage to other parts of the body.

And, it’s particularly unfair when the disease’s victim is an innocent child.

Adri distributing gifts

Adriana helping distribute gifts

We recently visited a center here in Lima called la Fundacion Peruana de Cancer.

The foundation’s mission is to raise the standards of care and treatment of cancer patients in Peru.

This Christmas, a group of our friends got together to donate gifts and snacks to the cancer patients currently under the foundation’s care.

Family distributing gifts

Tia Susy, cousin Nicolas and Adri with a new friend.

A family friend took the lead in coordinating the effort, and a few of us visited the center to distribute presents and spend a little time with the families currently living there.

We took Santiago and Adriana along so they could enjoy the experience and hopefully learn the important lesson of giving.

You know, we receive many reminders on Facebook or other social media to keep “Christ” in “Christmas”.

It doesn’t take much, really.

A toy, a piece of cake or some candy. A smile, a hug or a kiss.

Santi distibuting hugs

Hugs all around

A prayer for someone in need.

Christmas will come and go.

But Christ is always here.

Just take a step back, breathe and look into the eyes of your child or your parents or your friends……and you’ll see Him.

Have a wonderful Christmas everyone!

Family and friends

Alonzo, Rocio, Sister Lucia, Susy, Nicolas, Adri and Santi.

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Día de la Canción Criolla

While our friends and family in the states celebrate Halloween today, Santiago and Adriana will be celebrating Día de la Canción Criolla (Day of the Creole Song) at school.

They and their classmates are dressed in traditional clothing as they enjoy a style of music that dates back to colonial times.

Peru celebrates its traditional music and dance in restaurants and parks; on sidewalks and on the beach; in the mountains and the jungle.

Here are few pictures of the kids before they headed off to school.

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Tonight, we’ll break out the Halloween costumes!

Be safe, everyone!

A very holy October

Adri, Santi and mom at Las Nazarenas

At the Sanctuary Las Nazarenas, the main gathering place for El Senor de los Milagros. Adri in her purple robe, the main color of the celebration.

October is a very important month in Peru for the Catholic faithful. The entire month, the country celebrates El Senor de los Milagros (Lord of Miracles).

For me, the stage was set early in October when we were at a birthday gathering in Pachacamac, about 45 minutes south of where we live in Lima.

Gaby’s family has some property there, which they use on the weekends for occasional get togethers.

It was a typical celebration. Nothing out of the ordinary. Until a gentleman approached me as I was carrying Adriana around the property.

I’d met him before, and we’ve held brief conversations at other gatherings. He’s the father of my sister-in-law’s good friend.

St. Jude

St. Jude prayer card

Fairly recently, he was diagnosed with stomach cancer, and he’s been through a difficult time, as you can imagine. I would guess he’s in his mid-70’s.

Adri and I were off by ourselves, looking for snails or roly-polies or something like that, when he approached us.

He asked me if I knew who St. Jude Thaddeus was.

Being Catholic, I felt I should know. But there was no way I was going to lie, for fear of being struck down by lightning.

He proceeded to tell me that St. Jude is the saint we pray to in desperate situations. He was one of the 12 apostles.

He was martyred, suffering death by decapitation for his belief in Christ.

Jude2He told me I should pray to St. Jude every day. He pulled a laminated prayer card out of his wallet, which he gave to me as a gift.

He didn’t mention Adriana’s disease. He never has, to me anyway.

But, I knew what he was talking about.

As a man suffering from stomach cancer, I certainly understand his devotion to St. Jude. Especially during his difficult treatments.

I know from Gaby’s cancer, things can and do feel desperate and hopeless.

His faith was evident, as he touched Adri’s legs and her head with compassion and a smile crossed his face.

So, I pray.

Although I don’t necessarily view Adri’s condition as desperate, compared to others with more serious conditions, I still pray.

Perhaps selfishly.

Senor de Los Milagros

Sanctuary of Las Nazarenas

Sanctuary of Las Nazarenas

On October 24, we visited the Sanctuary of Las Nazarenas in downtown Lima. A special mass was held for patients of Arie, a facility where Adriana receives physical therapy.

A mother whose child also gets therapy there invited us to attend.

All month, you can go to services throughout the day to pray to Christ, the Lord of Miracles. It’s really quite encouraging and powerful to see so many people joined in prayer.

We were able to take Adri and Santi right up to the large statue at the front of the church to say our prayer and let them touch the statue with their little hands.

Senor de los Milagros

Adriana and mom at the foot of the Lord of Miracles.

Celebration of the Mass

Crowds fill the church

Many parishes have their own smaller statues that they use during processions in their own districts.

Last year, I was honored to be able to help carry the statue for a short distance down our street.

I thought of Adriana.

I thought of Christ carrying the cross to his own crucifixion.

And, I plan to do the same this week when the procession passes our house again.

I’ll pray for a cure. I’ll pray for children with SMA.

I’ll pray for a miracle.

Dad and Santi

Dad and Santi in last year’s procession down our street

 

I prayed for flowers and Luna

Adriana has trouble with her left hand.

It trembles sometimes.

That’s how one of her doctors suspected she might have SMA.

Her trembling hand.

It doesn’t have the same range of motion as her stronger right hand. And she often keeps it in a closed position.

We try to massage the muscles in her hand and forearm to loosen things up.

She hates it, though.

She pulls away as if to say, “leave me alone, I’m fine.”

Her actual words are usually, “no I don’t want that!”

But she can, and does, use her left hand.

We have to constantly reminder her to open up her hand when she reaches for her cup or other objects.

But she tries.

And she succeeds.

Patient in prayer

October day in Lima

A beautiful, sunny day at a nearby park.

When we pray, Adri asks us to wait for her.

She’ll slowly open up her left hand to meet her right.

She joins her fingertips in a namaste-like hand position.

She’s patient when she prays. She takes it slowly, whereas Santi likes to speed pray.

Recently,  I “caught” her praying on her own.

It happened while the kids were on vacation from school last week.

Santi and Adri at the park

Santi and Adri enjoying some sun

We visited a nearby park every day to get outside and get some fresh air.

Well, as fresh as you can get in a city of 8 million people.

With the sun coming out more, it was quite beautiful spending time together.

Santi went on his scooter.

Adri in her wheelchair.

She’s getting quite comfortable in her chair.

I love that she’s becoming more independent. And yet I’m angry that she’ll need to depend more on a wheelchair as she gets older.

Adri praying

Adri pointing at the flowers surrounding the Virgin Mary

But it really is a positive step in her life.

Anyway, back to Adri’s praying episode.

Some of the parks have religious statues. And quite often, you’ll see people stop and pray.

In the center of this particular park, there’s a statue of the Virgin Mary.

There’s a circular walking area and places to sit and rest.

Usually we get to the center where Adriana parks her wheelchair. She’ll tell me to take her out and hold her so we can run around with Santi.

This particular day, she stayed in her chair and rode around the center.

IMG_0177She stopped at the statue of the Virgin Mary and stayed there for a little while.

The day before, she had been admiring the flowers that someone had placed at the foot of the statue.

“Look at the pretty flowers,” she told me as I was carrying her around and we passed the statue.

This day, though, she went — by herself — to the statue.

I was close by, but not very close.

I figured she would come back to me and tell me to take her out.

Instead, she rode around a little more. She went through the center of the circular area and around again without looking at me or Santiago.

She was on her own.

She would pass people. Some would look at her and smile.

Others wouldn’t look at all. Not because they were uncomfortable seeing Adri in a chair. They were simply in their own worlds doing their own thing.

That actually made me feel pretty good.

Adri was just another person in the crowd.

Then, she returned to the Virgin Mary.

She still wasn’t calling for me, so I went and sat on one of the benches near her.

Santi brought his scooter over next to me.

I looked more closely and I noticed her hands together………namaste like.

She glanced over at me, looking a little embarrassed.

“I’m praying!” she said, almost annoyed.

“Oh, ok,” I responded and looked away.

She slowly opened her left hand again to meet her right.

She was having a conversation with the Virgin Mary.

I couldn’t make out the words, but she was talking to her.

“Ok, I’m done,” she told me.

I walked over to her.

“I prayed for all the flowers of the world……and for Luna,” she told me.

Luna is our dog in Colorado. Even though Luna lives with our friends now, we still consider her our dog.

I’m not quite sure why she prayed for flowers and for Luna.

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Adri striking a pose on a recent road trip

It’s difficult to get into the mind of a three year old.

Innocent and simple……yet wise in its own way.

A thought did cross my mind, though.

Will the day ever come when she tells me, “I prayed for God to let me walk”?

That’s what I pray for, so why shouldn’t she?

But with her strong personality and her strong will, it wouldn’t surprise me that if, instead, she tells me, “I thanked God for making me who I am.”

She’s not going to let a disease like SMA get in her way.

Sal solcito, calientame un poquito! (Translation: Come out sun, warm me up a little!)

Spring from our rooftop

Looking west from our rooftop (there’s an ocean back there somewhere).

The last week has been unusually cold and wet.

But just like that, prayers were answered…..

….and spring has sprung south of the equator!

Springtime from our rooftop

I’ll miss Colorado’s fall colors.

But for now, we’re enjoying the warm sun on our faces.

Let’s hope it lasts more than a few hours.

Happy fall to all our family and friends to the north!

The forgotten son…is doing just fine

Santi's school was teaching the importance of traffic rules. Each child brought their bike, scooter or skateboard to ride.

Santi’s school was teaching the importance of traffic rules. Each child brought their bike, scooter or skateboard to ride.

It occurred to me, looking back at previous posts, that I don’t write as often as I should about our Santiago.

We made the move to Peru primarily because of Adriana’s positive response to therapy here in Lima.

But of course, it’s a wonderful opportunity for both our kids to experience living in the country that raised their mother.

As with Adriana, Santiago loves being here.

And as is usually the case with most kids, Santi is spared from the typical parental stress points like jobs (or lack thereof) and paying bills.

Then, there are the not-so-typical stress points like moving halfway across the world to start a new life.

Both our kids have handled it very well.

Santi doesn’t need much or ask for a whole lot. Mostly, he asks for cookies, or peaches or pears from the local market down the street.

Santi on his new bunkbed

Santi on his new bunkbed

He’s constantly asking for food.

Or, he’ll ask to watch Transformers. “Just this morning, daddy, while you make my egg,” he’ll plead.

He goes to preschool next door (literally). The school’s front door is about 10 paces from our front door.

He can sleep as late as 8:00 to make it to school by 8:30 formation. Although recently, his teacher, Ms. Angela, asked that he be at school by 8:00, so the latest he can sleep now is 7:30 or so.

That will all change next year when he enters grade school. He’ll be attending Carmelitas, which is where his mom and aunts and uncles went when they were kids. As the crow flies, it’s not that far, but with Lima’s snail-like traffic, it could literally take 45 minutes if we don’t plan correctly.

It’ll be an adjustment.

Some poor kids are on buses by 6:30 to make it to school by 8:00.

As for preschool, Santi’s teacher says great things about him. He has the occasional bad day where he won’t listen or wait his turn (what kid doesn’t), but overall he’s doing well and enjoys being with his friends at school.

Santi singing along with the music teacher

Santi singing along with the music teacher

Santi’s playing soccer now. He seems to enjoy it, although he gets distracted or bored from time to time. I wish I had knowledge to pass on to him, but I’m clueless in this area. Whereas every other Peruvian kid was born with a soccer ball in his crib.

I think he’d much rather be swimming, but that will come soon with summer right around the corner.

We also have him in a theater class, which he enjoys very much.

Every once in a while, Santi will mention Colorado and our life in the states. “I miss Luna (our dog),” he’ll say, out of the blue.

“Hopefully, we can go visit soon,” is our typical response.

Then, he’ll go back to asking for a piece of ham or some cereal.

Unlike his father, Santi is not shy about striking up a conversation with just about anyone. He has friends up and down the street.

Santi singing for the grandparents

Santi singing for the grandparents

Each neighborhood has a security guard, and Santi will shout, “hola amigo!” as he rides by on his scooter.

The ice cream vendors know where we live because Santi shouts after them when they ride by on their bikes.

He’s also not shy about putting people in their place. When we ride bikes, he’s quick to tell someone she shouldn’t be walking in the bike lane.

I’m amazed at his lack of fear, sometimes.

I don’t know if I was like that when I was his age. I’ll have to ask my mom.

All I know is I hope I can be like him one day…..fearless and worry free!

 

 

 

Only God could train a humpback

Months ago, I wrote about a spiritual experience I had here in Peru.

We were at a party at a friend’s beach house near Lima.

The Pacific Ocean, Mancora

Mancora: a view of the Pacific from our hotel, Los Corales.

It was at a time when I was really questioning our move to this country and doubting whether it was a good decision.

Looking out at the Pacific Ocean, I felt a sense of peace.

God’s peace.

The pisco I was drinking probably contributed to my peace-like state, but there was definitely something more.

I was surrounded by people simply enjoying each other’s company. Enjoying the moment.

Causa

Special anniversary dish (Causa) from the staff at Los Corales.

It was then I realized that if we spend this journey called life regretting the past or fearing the future (or both), we will have missed out on what’s important.

God’s gift of family, friendship and human kindness.

God’s been working on his tan

On September 4, Gaby and I celebrated our 10th wedding anniversary.

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On board our whale-watching boat

As a gift, our family here in Lima took care of the kids while we snuck away for a long weekend.

We spent several days in Mancora, a beach resort in northern Peru.  We had gone there back in February and had fallen in love with the place.

We stayed at the same hotel, Los Corales, where Iman (the head waiter) and Sylvia (the manager) took care of us.

It’s slow season, and the place was practically deserted.

Mancora Peru: dolphins swimming along boat

Mancora Peru: dolphins swimming along boat

It’s also whale-watching season, and we took a tour that didn’t disappoint.

We saw dolphins, sea lions, turtles and, of course, whales.

This time, it was Gaby’s turn for a spiritual experience on the Pacific.

He’s always listening

One of the fixtures of these resort beaches are the vendors that come up to you selling jewelry, pottery, hats, sunglasses, clothing, massages and ice cream…….not necessarily in that order.

IMG_1563Our first day there, a psychic came up to Gaby offering her a tarot card reading.

She was tempted.

She wanted to know if our Adri would ever walk.

The next morning, as Gaby was running along the beach, she felt deep in her heart that it was the devil tempting her into believing that anyone, other than God, knew the answer to that question.

Adri, Santi and Diego in Pachacamac

The kids didn’t miss us a bit. Adri and Santi with cousin Diego in Pachacamac.

Will Adriana ever walk?

The doctors don’t know the answer.

We don’t know the answer.

Gaby realized — at that moment on the beach — that she need only trust in God…..not a psychic.

“God has always provided,” Gaby told me. “What reason do I have not to trust Him anymore.”

As she continued her run, Gaby decided to ask God if she could see another whale.

A whale then appeared about 100 yards out!

Mancora Peru: whale breaching

Mancora Peru: whale breaching

She then asked God to make it breach.

Just then, it jumped out of the water!

Finally, she asked for Adriana to walk.

She knows that answer will come in time.

Gaby came to that peaceful realization running along the Pacific. That same ocean that brought me peace months ago.

I got help from a little pisco.

Gaby just needed a whale.

A hope for better things

Today, Adriana’s and Santiago’s preschool celebrated Dia de los Abuelitos (Grandparents’ Day).

Each classroom put on a skit.

Screen Shot 2014-08-28 at 2.17.36 PMI know from seeing Santi’s previous performances that the skits typically involve dancing, jumping and moving around the stage.

This would be Adri’s first show.

I thought to myself, “How could she possibly fit in?”

“Are they just going to sit her in the corner to watch as her classmates perform?”

I felt the butterflies in my stomach as Adri’s class prepared to come on stage.

Her classmates took their places as Adri’s teacher, Ms. Paty, carried her in and placed her in her chair.

Not on the side of the stage….but in the center!

Part of me was so excited!

She’s in the middle of it all!

Then, my nervousness got worse.

What if she falls over?

What if another child accidentally bumps her?

And I’m embarrassed to say, I wondered what other people were thinking.

“What’s wrong with her?” they were probably saying.

Then, the performance started………..and every fear, ever worry, disappeared.

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Adri moved her arms and shoulders to the music, moved her legs, sang and recited her poem, right along with her classmates.

She smiled…..and then she saw Gaby in the front row, crying.

“Why are you crying? Adri asked.

For a few minutes, Adri was a performer.

Not a child with SMA, but a performer.

A normal three-year-old child, excited about being part of the show.

Part of her group.

Yes, she had to do things a little differently than the others, but she belonged.

She belonged!

It was her first performance. The first of many.

Some — like this one — will be successes. Others will be failures.

That’s the way it’s supposed to be.

Not because Adri is special………but because that’s the way it works.

All children are special.

And as long as we have teachers like Adri’s (Ms. Paty and Ms. Maruha) — those with passion and compassion for children — our kids can embrace their uniqueness and realize it’s o.k. to be a little different.

It’s o.k. to hope for better things.

That’s what happened to me today.

A renewed hope that Adri will be happy despite her challenges.

That she won’t feel the anger and bitterness I sometimes feel.

That’s she won’t live in fear.

Because after her performance today, there’s little doubt that better things are yet to come on this path God has chosen for us!

A glimpse of Adri’s battle against SMA

The other day, I was talking to my friend Joanne from Colorado.

We worked together when I first moved to Denver in 1998, and we remain friends.

She asked me to describe our home and our neighborhood here in Peru so she could have a sense of our life now.

She told me that she pictured us living in an adobe house with lots of open space.

I then began to explain the chaos that is Lima; 8-10 million people crammed into about 1,000 square miles (about 40 miles north to south and 25 miles east to west).

After I tried describing our home and neighborhood,  Joanne suggested I post more pictures.

I then realized many of you might enjoy seeing a little bit of our lives instead of just reading about it.

So, here goes.

Unique battles, common hopes

Every child stricken with spinal muscular atrophy (SMA) has a unique battle.

Some need a tube to eat or breathe…….or both.

Some need help maintaining a seated position.

Others can’t sit at all.

Some need help holding their head up straight.

Their brilliant minds are trapped in a weak body that’s getting — or will eventually get —  weaker.

What’s not unique is every victim’s and every family’s hope for a cure.

A treatment within the next few years that will give every patient greater strength and mobility, the ability to experience more out of a longer life, and quite literally, the chance to hold their heads up high.

Every Wednesday and Friday morning, we take Adriana to physical therapy at an institute called Arie, which we were able to find through Gaby’s friend.

Each session is a race against the clock to find a cure. To keep her body and her muscles moving so that when we have a treatment, she has a stronger starting point to build her body back up.

Some children face tougher battles than Adri, and others face easier ones.

All I know is that all these kids are much stronger than I’ll every be.

The clips

Here you’ll see, through a series of video clips, a little bit of Adri’s battle.

I tried to keep each video under 30 seconds.

The whole process takes a couple of hours, round trip, but I know you don’t have time to witness all of it in one sitting.

But hopefully you’ll enjoy seeing a few clips of how Adriana is progressing.

Her therapists are happy with her progress, and of course, so are we!

Enjoy!

GETTING THERE: These first clips show you our commute to therapy:

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GETTING READY: These next clips show Gaby getting Adri ready for therapy.

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THE THERAPY: Therapist Zeida takes Adri through various exercises designed to help her maintain her strength.

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Look mom! Like Luna!

When we finally made the decision to move to Peru, we knew we’d have to make certain sacrifices and there would be many things we’d miss:

  • Our home filled with so many memories
  • Family and friends who loved and supported us through all our trials
  • Beautiful weather, fall colors and winter snow storms (Gaby doesn’t miss those)
  • Our church and the friends we made there
  • A job that I really enjoyed
  • Saturday Costco runs with the kids (couldn’t beat the $1.50 hot dog/pizza and soft drink special); Santi always had the pizza and Adri a little of both
  • Trips to the zoo or children’s museum
  • Downtown Denver
  • And the list goes on

One thing that left a large hole in our hearts was our decision to leave Luna, our black lab, behind.

Adri and Luna

Adri and Luna during our last visit to Denver (February 2014).

Our good friends Tony and Nancy (Gaby’s adoptive parents in Colorado) offered to keep Luna until we got things settled in Lima.

And then, they would send Luna on a plane a few months later to be with us again.

But as often happens in life, our plans changed.

Tony and Nancy are dog lovers.

They have two other yellow labs, a beautiful home with a huge yard, a swimming pool and a stream that runs along their house.

So essentially, we left Luna at the equivalent of dog heaven on earth.

Each time Nancy sent over a video of Luna swimming and playing with the other dogs, we realized that probably the worst thing we could do was bring her to live with us in Lima.

She would be cooped up in a small apartment all day, and we couldn’t devote near enough of the time labs need to be happy.

Santi and Adri with Luna and Beanie

Santi and Adri with Luna and Beanie (February 2014, Denver)

Tony and Nancy realized the same thing and offered to keep her.

Part of me thinks there was a small hole in Luna’s heart in the beginning, but it quickly got filled with daily walks, chasing balls and napping with her playmates on her own lazy-boy chair.

And a puppy named Cairo will bring healing

Part of the hole in our hearts is now being filled by “Cairo.” That’s the name of our neighbor’s black lab puppy.

Since we arrived in Lima, anytime the kids see a dog resembling Luna, they respond with, “Look mom! Like Luna!”

Cairo

Adri and Santi with Cairo (August 2014, Lima)

Actually, any black animal evokes that response:

  • A black lab: “Look mom! Like Luna!”
  • A black chihuahua: “Look mom! Like Luna!”
  • The black jaguar at the zoo: “Look mom! Like Luna!”
  • A black capybara: “Look mom! Like Luna!”
  • A black guinea pig: “Look mom! Like Luna!” Until it gets served up for lunch and any sort of resemblance pretty much disappears.

But Cairo, being a true black lab puppy, is exactly like Luna.

Gaby immediately began to lecture our neighbor, Ernesto, about the needs a lab has: constant exercise and constant attention.

“When you’re ready to give him up,” Gaby told him, “make sure you call me so we can take him from you.”

Yesterday, Gaby went over and “borrowed” Cairo so Santi and Adri (and she) could play with him for a while.

The pictures and videos speak for themselves.

I’m just waiting for the day Gaby borrows him again and accidentally forgets to return him.

Our hole for Luna will never be filled, but we’re trying our best to ignore it.