Lima Back to Littleton: Our SMA Journey Continues

Adri shows off her bracelet

We’re blessed with some wonderful new neighbors! Our neighbor, Jason, made Adri this bracelet.

In the summer of 2013, we began a journey.

Began a new life.

Traveled thousands of miles south to a new home in Lima Peru.

Filled with hope.

And a fair amount of fear.

There was no treatment for our daughter Adriana, who, a year prior to our move, was diagnosed with spinal muscular atrophy (SMA).

No medication to fight the disease.

Just some drugs we had heard of that were in different stages of development.

Backyard swing

We’re blessed with a beautiful new home! Santi and Adri playing in the backyard.

The doctors tried to convince us there was hope.

But they were unsuccessful…….in the beginning.

The only treatment we could give Adriana was physical therapy.

Our trips to Lima prior to our decision to move there made us realize that the best thing we could do for her, at the time, was move to Peru where her response to physical therapy had been very positive.

Our goal was to keep her as strong as possible until the time came when she may qualify to participate in one of the clinical drug trials that was advancing the fastest.

The time finally came at the beginning of the year, when our journey took a 180-degree turn.

To Children's Hospital

On our way to the initial screening for the ISIS-SMNrx drug trial. Our prayers were answered, and Adri was accepted.

Right back to Colorado where Children’s Hospital was chosen as a location to administer the third phase of the ISIS SMN-rx drug trial.

It’s been quite a while since I’ve written in our blog.

As you can imagine, the last seven months has been a non-stop adventure.

Back to familiar surroundings.

But still facing many unknowns in this latest leg of our journey.

Adriana was accepted into the clinical drug trial and completed her first treatment in May. She had another in June and will complete her third this week.

She’s doing very well! Your prayers and the Lord’s guidance have made it so.

It’s hard to tell if she’s receiving the medication.

It’s a double blind study, which means not even Adriana’s doctors know if she’s receiving the medicine.

For each procedure, she’s wheeled into the room where only a handful of individuals are present (the anesthetist, the person administering the drug, a nurse or two).

Adriana’s either receiving the medication through an injection in her lower spine.

Or, they give her a needle prick at the base of her spine.

We can see the dot on her back.

We just don’t know if it’s a full injection of medication or a prick.

That’s the way the clinical trials work.

Some patients receive the drug.

Some patients are part of the placebo group.

There are times when we think we see increased strength in Adri, which leads us to believe she IS receiving the drug.

But, we won’t know for sure for a while.

Of course, I have many details to share about our journey back, which I hope to do with this same blog that I started when we moved to Peru.

But with this first blog post, I want to share an event that has motivated me to start sharing our story again.

Very recently, the SMA community lost a little girl.

A little girl who was – and continues to be – a strong source of hope for many.

Her life spoke volumes when it came to perseverance in the midst of insurmountable obstacles.

Yet, she never spoke a word in her seven years of life.

Gwendolyn Strong was diagnosed with SMA, Type 1 when she was a baby. The doctors told her parents she wouldn’t live long.

Perhaps two years.

All parents of SMA Type 1 patients receive that diagnosis.

This past July 25, Gwendolyn died. She lost her SMA battle.

Gwendolyn’s parent, Bill and Victoria Strong, created a foundation in their daughter’s name back when she was first diagnosed.

They devoted their lives to SMA awareness and the search for a cure.

They are heroes, like their daughter Gwendolyn.

They share their SMA story.

They shared how they spent the last few moments with Gwendolyn, before she took her last breath. How they told her it was o.k. to let go.

Adri and Luna

At home with Luna

The experience of watching their child take her last breath was heartbreaking to read. Yet, the grace with which Gwendolyn lived her life, and the grace with which she left this world are truly inspirational and give us, as SMA parents, hope that a cure will soon be found.

So, I feel I should continue to share our story, too.

Not because it will have the same impact that the Strong family has had on so many.

But because it’s only by sharing that we can provide hope for others – whether it’s one person or one million.

Gwendolyn lived by the motto: Never Give Up.

It’s what allowed her to live years longer than the doctors thought she would.

It’s what allows her parents to be such strong advocates for SMA awareness.

And, it’s what allows us to wake up every morning and believe that a cure is not that many more mornings away.

Our Littleton to Lima journey has ended.

Our Lima to Littleton journey has just begun.

It’s good to be back!

 

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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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.

adri pose

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!

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.

whale watching tour

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.

Building your LIFE resume

I remember when my last boss decided to retire. I didn’t know her exact age, but I had a good idea of how old she was. It didn’t make sense to me that she was retiring so young.

I know she had a number of reasons for doing it, but she shared one that resonates with me now as we continue to find our footing here in Lima.

“I want to work a little bit on my life resume,” she said.

Those may not have been her exact words, but I understood the meaning.

She wanted to do things that made a difference…..to her.

Things that meant more to her than a “typical” corporate job.

Adri and Nati

Adri walking with her friend Natalia

When “enough” is truly “enough”

One of the biggest areas of stress for us right now is finding work here in Lima.

I have my job teaching English part-time (early mornings and afternoons), but it isn’t enough.

Or is it enough?

I’m beginning to take a closer look at how I define “enough.”

Granted, we’re not flush with cash, and we may soon have to tap into savings, but we’re getting by:

  • We have a roof over our heads
  • We eat three meals a day (if not more)
  • We have clothes on our backs
  • We have a car to take Adriana to therapy and to get around town
  • We have the kids in sports and art classes
  • We eat meals together
  • We visit the beach in the summer
  • We ride bikes and go to the park together
Santi and mom

Santi and mom during mother’s day activities at school

Our kids are happy, and WE are too — when we forget to worry about things and realize how easy we have it sometimes.

Many people would say we live like kings.

That’s easy to see when we drive through poorer areas of the city. And, there are plenty of those areas around.

Then I start to realize that even though we don’t have a lot of stuff, we certainly have enough.

More importantly, we’re experiencing something far more valuable than anything we have before. Life in a different country.

Even though Gaby was raised here, this return to her homeland is still a life-changing experience for her. I think it’s safe to say that 15 years in the states has changed her perspective of Peru.

Putting the work resume on hold

This is a period in my life — in this short life that we have — where I have the opportunity to add to my life resume.

I’m doing it everyday. I just never looked at it that way.

Bike ride

The maiden bike ride

Here are some of the new “duties and responsibilities” I’ve been able to help Gaby with over the past year:

  • Take our daughter, Adri, to her therapy sessions
  • Witness Adri’s physical advancement as therapists help her fight her spinal muscular atrophy (SMA)
  • Take Adri to her preschool classes
  • Witness her classmates’ excitement when we enter the room
  • Experience the warmth of Adri’s teachers as they help Adri get situated in her seat and ready for class
  • Take Santi to preschool (depending on the day)
  • Experience the joy in my kids’ faces when I pick them up after school
  • Have lunch with the kids
  • Take them to the park – Santi on his bike or scooter and Adri in her wheelchair
  • Do homework with the kids
  • Be there at night to put them to sleep, say prayers and listen to them tell each other to “be quiet” so they can fall asleep

As our friend Claudia reminded me, not everyone has the opportunity to spend quality time — everyday — with their kids.

Once I get a full-time job, my life’s work will end, and I’ll go back to “making a living.”

I’ll make more money, but I fear it will never be “enough.”

Which is why, for now, things are just fine.

I have plenty enough to make me happy!

[Video 1: Our friend, Claudita, loaned us her bike, and Adri couldn’t be happier. I feared she wouldn’t be able to maintain her balance, but happily I was wrong.]

 

[Video 2: I never thought peeling a banana would be great therapy for Adri’s fine motor skills. Notice her weaker left hand as she often struggles to keep it open.]