I’m not perfect; I can’t walk

I’ve been thinking a lot lately about the word “perfect.”

I never realized how often I use it – especially at work:IMG_2383

  • “How does this Web page look?”
    “Perfect, nice job!”
  • “I should be able to complete that by Monday.”
    “Perfect, thanks!”

What got me thinking about it was our recent summer vacation to Florida. The kids’ first Disney trip.

We were hoping for perfection. And we got it — almost.

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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.

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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.

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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

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Merida’s Very Happy Halloween

The stares came.

I didn’t have to see them.

I felt them, like when you’re on a crowded bus and a fellow rider brushes against you.

The stares were slightly annoying, but unavoidable.

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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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Happy Birthday, Santiago!

On November 24, 2008, Santiago Jesus Gomez entered our lives at 5:43 a.m.

It was a Monday.

This Monday morning, in 2014, Gaby and I were remembering bits and pieces of that day, six years ago.

At 7:43 this morning (or 5:43 a.m. Mountain time), Santi entered our room with a smile on his face.

Ok, it was give or take a few minutes, but it was almost the exact time he entered the world six years ago.

He may not have been smiling back then. In fact if I recall correctly, he was pretty irate.

But he was smiling today; excited about the party he would be getting at school. The presents he’d soon be receiving.

I watched him today, interacting with his friends.

I watched him include his little sister in the activities.

I watched him give up his chair during “musical chairs” to his friend Alejandro so Alejandro wouldn’t lose.

I watched him lead a game of Simon Says.

I watched him.

And I wondered.

What did I do to deserve such a gift?

But perhaps a more appropriate question is: what will I do to continue to deserve it?

Six years ago, God filled our lives with immeasurable joy and equally immeasurable love.

I must work everyday to earn it.

But if all it takes is to love my son, then the task is already complete.

Because loving you, Santi, is a done deal.

Happy birthday!

Preparing the classroom

Preparing the classroom.

Mom and Adri

Mom and Adri waiting for Santi.

Santi's entrance.

Santi’s entrance.

Brother and sister.

Brother and sister.

The girls

The girls of the class.

Santi with his teachers, and Alejandro on the left.

Santi with his teachers, Angela and Yadira, and Alejandro on the left.

Adriana and Adrian.

Adriana and Adrian.

Rodrigo.

Gift from Rodrigo.

Carlos

Gift from Carlos

Adrian

Gift from Adrian.

Isabella

Gift from Isabella

Sylvanna

Gift from Sylvanna

Natalia

Gift from Natalia

Adri

Adri joined the party.

Santi

Santi hands out gifts

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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.

 

 

 

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!

 

 

 

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!