Am I going to walk?

Backyard leaves

Rolling in the backyard leaves

I’m not sure what we’re going to do on Adriana’s fifth birthday.

We’ll have the cake and presents, of course.

The get together with friends.

But, I don’t know what we’ll do if she asks the question again.

“Am I going to walk when I’m 5?” Continue reading

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.

Love ain’t what I thought it was

Do you ever find yourself traveling back in time to a place when life was simpler?

When your responsibilities were practically non-existent?

When the biggest decision you had to make was whether to watch television or read a book?

I’m certainly guilty of taking part in this time travel, particularly when life gets complicated — or when I make it complicated.

And I’m a bit ashamed to say that, at times, I wish I could spend a day or two back in the selfish life I once had.

I don’t wish for a different life.

Just a break.

Then, my mind starts to wander a bit further.

Isabella's party

Adri (in pink) and Santi at a friend’s party

What if I didn’t have what I have now?

  • A beautiful wife who loves me (I’m fairly certain)
  • Two beautiful children who love me (especially when I buy them ice cream)
  • Family and friends who love me (even after getting to know me)

Then the question becomes: what if I didn’t have love?

Santi and Nati

Santi and friend, Natalia, about a year ago before their class skit

I once thought that love was a synonym for happiness.

Call it youthful ignorance.

I now know that love can encompass just about every human emotion that exists:

  • joy, anger, happiness, fear, excitement, sadness, pride, envy, jealousy, confidence, wisdom, exhaustion, confusion, clarity and the list goes on

I realize that I’m in love with my wife, not because we’re always happy with each other.

If that were the definition, then many couples would need to redefine their relationships.

I love Gaby because I don’t need anyone else like I need her.

Adri on tricycle

Adri learning the rules of the road with her classmates.

When we argue or fight, there’s a sort of emptiness in my chest. Breathing becomes a bit more difficult.

When she called me to tell me she had breast cancer, that emptiness transformed into an abyss. It was suffocating. I had to remind myself to breath.

Love wasn’t supposed to be like this.

Then, there are our children.

I remember when Gaby was pregnant with Santiago.

I would have conversations with my coworkers who had children, asking them what it was like to have kids.

Adri at school

Adri playing with her classmates at school.

Most would tell stories or try to explain the many emotions that come with having a child. Then, there was one guy, Erik, who simply couldn’t answer. Or wouldn’t answer.

I guess he felt that any possible explanation he could provide would fall short of reality.

“What’s it like having kids?”

“You’ll find out soon enough,” he said.

Santi the chef on Mother's Day.

Santi the chef on Mother’s Day.

And of course, I did.

Having kids is like love on steroids, which also means it’s every other emotion on steroids.

It’s staying up with a sick child, monitoring his breathing, praying for a fever to go down and asking God to transfer the virus over to you so your child isn’t so miserable.

I remember sleeping with Santiago in our Lazy Boy chair when he was just months old and very sick. He was so congested, I just wanted to keep his head elevated so he could breath easier.

Feeling him asleep in my arms was a feeling like no other.

It’s emotional extremes; incredible highs and painful exhaustion.

Adri and friends

Adri clowning with friends before their skit

And, I’m just the dad.

If you want to know about pain, talk to Gaby.

Love wasn’t supposed to be like this.

Then, there’s our Adriana.

The love a parent has for a special needs child is no different than any other parent’s love for his child.

In my case, though, more of the negative emotions consumed me. At least in the beginning.

20140828_104320Fear, anger, sadness.

I guess it’s normal.

I still get upset when we go to parties and Adri can’t run around with the other kids. Or sad when she can’t ride a scooter with her big brother.

But, more positive emotions are starting to seep in as she grows up.

Joy when I see her interacting with her classmates or participating in a school skit.

Relief when I see her doing well in her therapy sessions and maintaining her strength.

Adri's exposition

Adri presenting on starfish

Or pride when she gives a presentation on starfish.

Watching the video (at the end of this blog), I still get that empty feeling in my chest when she has difficulty opening her left hand, or holding her head up, or lifting the pointer to the pictures on the board.

But, she figures it out, and the joy returns.

The roller coaster of emotions.

I talked earlier about wishing I could go back in time.

DSC_0834-001My mom once told me that she wished she could go back to when my siblings and I were little.

Even though my kids are 5 (almost 6) and 3 (almost 4), I sometimes find myself wishing I could do the same thing.

Go back to when my parents stayed with us for a month to take care of Santi while Gaby transitioned back to work.

When my dad would take him down to the basement, place Santi in his walker and stay with him when Gaby and I headed off for work.

When I would step off the bus after work and see my mom holding Santi in the window so he could see his dad getting home.

Adri and Luna

Adri climbing on Luna.

Or, back to when Adri was crawling.

When she climbed up on our dog, Luna.

When she was cruising around Santi’s train table, and we were sure she was only weeks away from walking.

When we met with the doctor and she told us Adri has SMA.

Maybe if we go back, the diagnosis would be different.

Of course, it doesn’t work that way.

And so, we end with love.

That human emotion that Christ, in his human form, displayed when he gave his life to save us.

That gift that reminds us that, no matter how bad things seem, it’s better to choose love.

Not easier.

Just better.

 

 

 

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.]

 

Training Wheels: A Metaphor for Life

I didn’t think the day would come so fast!

I guess anyone with children finds themselves saying that a lot.

Santiago asked us to remove his training wheels.

His friend, Gabriel, rides without them. So, he had to try it.

I removed them.

Santi bike ride

Santi’s first ride without training wheels!

He rode for several minutes with me running alongside, my hand on his bicycle seat.

I let go for a few seconds.

Hand back on his seat.

Hand off for 10 seconds.

Hand back on his seat.

All the while, giving directions:

  • Stay to the right.
  • Keep pedaling.
  • Stop pedaling.
  • Hands on the brakes.
  • Watch for cars.
  • Good job, Santi!

I ran up a little ahead of him.

Santi and Adri baking

Baking celebratory cookies after the big ride!

His eyes grew wide with excitement — “I’m doing it by myself, daddy?!!”

“All by yourself!” I said proudly.

He hadn’t realized he was riding mostly by himself the whole time.

He had his share of wobbles and one fall.

But there were no tears this day.

No regretting the past or worrying about the future.

Only joy!

That’s when I realized.

As hard as it is to let go, and as much as we want to hold on, our children are meant to fly.

We love them.

We catch them when we can.

But eventually they fly too fast, and they fly too high.

And we can only sit back, wipe away the tears and hope we did it right.

Enjoy the video!

 

 

 

Responses Needed: Positive Thinkers Only

Back in April, I started teaching English part time for a British company that offers classes to businesses.

In the mornings and afternoons, before and after work, I spend an hour and a half teaching one-on-one classes.

The demand for English teachers is high here.

During my daily job search for full-time work, I see tons of ads for English teachers.

The economy is very strong in Peru, and many corporations want their employees to speak English because that’s the language of international business…….at least for now.

I’ve never considered myself the teacher type.

But on this rare occasion where I have the upper hand in knowledge, I do have something to offer.

I was considering this a temporary “gig,” until I find full-time employment, but with the number of responses to resumes I’m sending out, this may end up being more permanent.

And that’s o.k.

At least for as long as our savings hold out.

Don’t know what we’ll do then, but that’s a concern for another day.

Which leads me to share a recent revelation that came about, partly due to my teaching job.

A revelation about the power of positive thinking.

Baby steps toward positive

The other day, someone shared a quote on Facebook.

Lao Tzu, the Chinese philosopher and poet said:

If you are depressed you are living in the past.
If you are anxious you are living in the future.
If you are at peace you are living in the present.

When we first moved to Peru, I spent a lot of time depressed and anxious.

Adri with Elsa

At a party: Adriana with Elsa from Frozen. When I focus on the present, and enjoy the important moments, I can’t help but feel positive.

The only times I felt good — and feel good now — were when I focused on the now. A dinner out with my wife, playing at the park with Santiago or watching Adriana at a great therapy session or surrounded by her classmates.

After almost a year of settling in, things are much better, but the negative emotions still creep in now and again.

Particularly when I’m focused on my job search.

Both Gaby and I worry about finding work that pays enough to preserve our savings.

Then yesterday, she said, “I’m not going to worry about it anymore.”

We always tell each other that something good will come along soon.

Actually, she says it more than I do.

Adri and Santi with Anna

Adri and Santi with Anna from Frozen

But it all comes back to positive thinking.

And, in our case, the faith that God will provide everything we need.

He’s done it so far, so there’s no reason to believe otherwise. Or so says the positive thinker in me.

The last couple of weeks, my lesson plans for a couple of my English students revolved around positive thinking.

We read articles about positive thinkers and how they are typically more productive, healthier and happier than pessimists.

We went through grammar exercises where the student responded with positive or negative responses to statements I made.

For example, I would say: “I’m getting married.”

The student would respond positively with, “Congratulations! I’m sure you’ll be very happy.”

And negatively (or perhaps realistically) with, “You’ll be divorced in a year.”

Just kidding about the “realistically” part.

Sadly, it was all too easy for me to formulate the negative responses.

I guess that comes from a lifetime of leaning toward pessimism.

Yesterday, I asked Gaby what type of job she really wants.

She said she would like to work for an airline.

I immediately jumped on the pessimist’s bandwagon.

“You want to commute three hours a day?!” I asked.

I could argue that I asked her “nicely” and with “great concern,” but there’s really no nice way to dash someone’s hopes.

That’s when I pray to God to make me the loving husband she deserves. The one that can show her just how much I love her.

One might argue that this would take a miracle.

But, I’m positive I can transform………..about 75% positive.

Or at least I can begin the transformation. With God, any miracle is possible.

Oh and if you have any suggestions on living a more positive life, send them over.

This is definitely an area where I lack in knowledge.

Ok, Yoga, Make Me Healthy Again

He who is completely without stress exists solely in works of fiction.

Since our move to Lima (and for quite sometime before), stress has occupied a large part of our lives.

Gaby’s cancer, Adriana’s diagnosis and the transition to a new life are all the perfect setting for stress to plant its seeds and grow.

With help and prayers from you, our family and friends (and strangers), we’ve overcome the hurdles so far!

A new realization

Yesterday was a wonderful day, as some of you may have read!

Adriana experienced preschool for the first time, and we glimpsed the bright future we know she has ahead of her.

I came to the realization, however, that if I don’t take care of myself physically and emotionally, I risk the chance of not being around to see our kids grow up and have their kids.

I risk the chance of not seeing the cure for SMA and Adriana’s first steps.

Emotionally, I feel like I’m in a very good place. As I mentioned, your prayers and support — and my faith in God, although tested all the time — have strengthened me!

Physically, though, I’m nowhere near my happy place. And, I seemed to have lost the directions to get back.

I’m not in horrible shape. In fact, I just had some bloodwork done here in Lima, and my numbers are very good. Better than they were in the states.

[Aside]

Secretly, I was hoping they’d be worse so I could make the excuse that we need to move back home, for the sake of my health. (Only kidding………..sort of.)]

[End of aside]

My body, however, is one big, tight ball of stress. I’m in constant pain.

I know what you’re saying: “Your getting old.”

My response? “Shut up!”

Photo on 5-29-14 at 11.48 AM

My butt should be much higher, back straighter, and I think my feet should be flat on the ground. I”m going to need more than 30 days.

Anyway, it’s time to make things right……for me and my family!

So today, I started a 30-day yoga challenge on YouTube.

Please send me any prayers, positive thoughts or anything else you can muster up to help me see it through!

Photo on 5-29-14 at 11.47 AM #2

My lifted leg should be pointing toward the ceiling. Yes, that’s right, I said ceiling.

Day 1 realizations

  • My downward-facing dog pose (which should look like an inverted V) is an embarrassment to the practice of yoga (see accompanying photo).
  • Every time the instructor says, “now if this doesn’t quite feel comfortable, try doing it this way,” she’s talking directly to me. Like she knew I’d be attending.
  • Sitting cross-legged on the floor is not supposed to be painful.
  • A quote from one of my favorite TV shows will be resonating loudly during this challenge: “My body doesn’t do that without booze.”

Wish me luck!

Joy Cometh…with a Bucket of Sand

Santiago spent three nights away from us. It’s the longest he’s been away from mama, papa and Adri.

We dropped him off at a beach called Naplo, about an hour south of Lima. His Tio Luis and 3-year-old cousin, Flavia, were spending the week there.

He saw the sand and ocean and was eager to send us on our way.

We left him without a problem.

Then, that night, the call came.

Santi was crying on the phone with his mama, wanting us to come get him.

We fought every impulse to do it.

After hearing his mom’s voice, and after Tio Luis gave Santi his “magic pillow,” things calmed down.

Luis sent us this picture the next day.

naplo_santi_flavi_sand

“…weeping may endure for a night, but joy cometh in the morning.” -Psalms 30:15

All it took was a bucket, some sand and his cousin Flavia.

It comes in different forms for each of us, but there is joy in the morning.

I don’t always see it, but God provides.

I pray He gives me the strength and wisdom to find joy every day.

And, I hope you find it, too.

Battles Lost and Won

The last few weeks, we’ve experienced tragedy and joy from two incredible individuals battling illness and fighting for their lives.

Two battles that may have have ended differently with the slightest of changes.

Battle lost

I met my friend Leanne about 12 years ago when we started working for the same company. She defined positivity. With a permanent smile on her face, you couldn’t help but feel energized when she was around.

We weren’t best friends, but I was lucky to know her…to call her a friend.

leanne

Leanne, a beautiful soul now at peace in God’s hands.

She was 33 years old, and she committed suicide.

As her husband, Josh, explained to all of us who were in shock, “she lost her battle with depression.”

I didn’t know she suffered from the horrible illness.

Just a few months ago, Leanne and Josh were finishing up their nearly two-year trip around the world with a stop in Lima Peru.

I met up with them for a couple of drinks.

leanne_memorial run

Friends and family in Denver come together to remember Leanne.

I’d have bet all the money I have that the last thing Leanne would do is kill herself.

She was sick, and I couldn’t see it.

No matter how many times I replay that last evening I saw her  – the last time I’ll ever see her – I cannot remember a sign that she was depressed.

Maybe that was a sign in itself.

Maybe she was so burdened with lifting us up that she couldn’t tell us she needed to change places for a while – and be lifted by us.

That even she was weak.

Maybe if we had glimpsed the true measure of pain she was in, she would still be here today.

Maybe.

And, I could have taken her up on that drink she offered to buy me the next time I saw her.

Instead, she did lose her battle, and it’s made us all realize how fragile life is and what’s truly important to each of us.

Battle won

At about the same time my friend took her own life, a little girl was beginning a battle for hers.

Gwendolyn Strong is a six year old with Type 1 Spinal Muscular Atrophy (SMA). Infants with Type 1 typically do not live past two years of age.

About a month ago, Gwendolyn got very sick. As her mom describes it, “half a hair in a different direction” and they would have lost her.

She fought hard and won the latest of many more battles with her disease.

Adriana’s fight

Even though our Adriana, who has Type 2 SMA, is not in the same physical condition as Gwendolyn, I find myself experiencing many of the same feelings Gwendolyn’s parents do – experiences they write about in their emotional and inspiring blog.

naplo_familia diaz

Adriana, in her Tio Luis’ arms, with prima Flavia, abuela Elsa and Santiago.

During our latest weekend at the beach, I told Gaby how sometimes my blood boils with anger when I see healthy children running along the shore, jumping with their strong little legs into the holes they make with their strong little arms.

Adriana watches them, but I don’t know yet what’s going through her head.

She sees her brother, Santi, and cousin, Flavia, playing, and she’ll tell me she wants to “jump in the water.”

I carry her into the ocean, lowering her just enough so she feels the cold of the water on her legs and back.

Part of me wishes the sea water would awaken the nerves that would allow her to stand and walk.

She smiles and laughs just like the other kids, which in a way is a miracle in itself.

naplo_santi_adri

Adriana in daddy’s arms with Santi splashing below.

Gaby – always the positive one – needs to remind me every so often that Adriana is truly happy living here in Lima. When I take time to focus a little, I realize it’s true.

Doesn’t matter what my attitude is…she’s busy being happy!

And when I see the strength of people like Gwendolyn and her parents, I remember how fortunate we are to have another day with our children; to see them live and learn, to see them laugh and cry.

The last paragraph from their latest blog post helps me put things into perspective:

“Navigating through grief and fear and finding a way to accept that we will lose our incredible child ironically has helped us live more presently and more freely. You can disappear in the overwhelming grief, be resentful of the path you must walk, or you can live in the now and truly cherish each moment knowing it is a gift. Our daughter’s innocence that life could be any different has taught us that despite our own grief she thinks life is great — and her outlook gives us perspective. Our daughter’s terminal illness has taught us to pick ourselves up and keep moving forward — no matter how devastating the future may be. She deserves our courage. She deserves adventure. She deserves a typical childhood. She deserves a full life — and a joyful one.”

Life is a gift that can be taken away in a second.

It’s not always easy, but I hope we each cherish that gift – before God takes it back for Himself.

Thank you for being part of our lives!

Are You Happy with Me?

Adri's Dress

Adri showing off her new dress

It’s easy for others to define you:

  • Special needs
  • Disabled
  • SMA child

It’s easy for them to paint a picture of your future:

  • You may stand
  • You may take a few steps
  • You’ll need a wheelchair

And though they hold no ill will toward you

They don’t have the privilege of knowing you:

  • Of hearing you laugh

    Summer Saturday

    A summer Saturday stroll

  • Of seeing you cry
  • Of watching your inquisitive mind work

Lately, you’ve been asking us “are you happy with me?”

As if there could be any response other than “more than you’ll ever know!”

Adri the Artist

Adri in art class