HOPE: A dangerous thing or the best of things

In The Shawshank Redemption, Ellis Boy “Red” Redding called hope a dangerous thing. “Hope can drive a man insane,” he said. “It has no place on the inside.”

Andy Dufresne saw it differently. “Hope is a good thing, maybe the best of things, and no good thing ever dies.”

awards-ceremony

Playing table hockey at Santi’s awards celebration.

When we found out Adriana has spinal muscular atrophy (SMA) Type 2, our world was devoid of hope. For a time, all we knew was despair.

“Life limiting.”

“Wheelchair.”

“Degenerative condition.”

“She’ll most likely never walk.”

These are the things we heard. The words that consumed us.

For a time.

Continue reading

Time to Shine

breakfast

First day of school breakfast

Adriana’s preschool teacher, Teacher Mary, sent her a surprise note this week – Adri’s first week at her new kindergarten.

“It’s your time to shine,” she wrote.

Adri’s preschool teachers know Adri’s capacity for learning.

Her strong personality and will.

Adri’s new kindergarten teachers have only had a couple of days to get to know her.

Continue reading

From Double-Blind to Eyes Wide Open

af deck2Almost a year and a half ago, Adriana started her Ionis clinical trial at Children’s Hospital.

Since then, she’s received injections of nusinersen, a promising new drug that could cure spinal muscular atrophy (SMA), or at least stop or delay its degenerative effects.

Actually, we’re not sure if she received the injections.

We’ll never be sure.

It was a double-blind trial where only certain individuals know if she received it.

What we do know is that we haven’t noticed any regression in Adriana’s strength since she started the trial!

Even better news came out this month!

Due to the drug’s success in clinical trials in infants, the manufacturers are moving to what we pray will be a fast FDA approval of the medication!

Here’s another thing we know

adri grad

Preschool graduation walk

Continue reading

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

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!

 

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

 

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.

 

 

 

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.

.

.

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!

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.