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!

Questioning the past? It’s not worth the effort.

My mom is a breast cancer survivor. She’ll be coming up on nearly 20 years since she was diagnosed and treated.

On her latest checkup, her doctor asked if she would be willing to participate in a cancer research study on how genetics play a role in the disease.

Doctors asked my wife, Gaby, to do the same thing during her breast cancer treatment.

IMG_1109Same with our daughter. We’re starting to get asked to participate in research studies about Adriana and the disease she lives with, spinal muscular atrophy (SMA).

All in an attempt to gather as much information as possible to better understand a disease, how to diagnose it, how to treat it, how to live with it, what to expect from it, and so on.

For my mom’s study, they’ve asked her to gather a bunch of information on her family.

Makes sense for a genetic study.

They want to know how much my siblings and I weighed, for example, at birth. My mom has been calling sisters, cousins and other family members for information.

My mom hates to bother, but everyone loves helping out……and catching up.

The genetic study got me thinking about Adri’s SMA and the fact that Gaby and I are carriers.

I vaguely remember doctors suggesting we inform our family about the disease, should anyone in the family want to be tested.

I honestly hadn’t thought about it much, but now realize I should talk to my siblings (and other family members) and make sure they understand the disease and its genetic nature.

They can then inform their families, if they choose to.

They can decide.

I then went back to the day the doctors told us about Adri.

santi_soccerAmidst the anger, sorrow, confusion…….the fog…….we managed to ask about our son, Santiago, who was three years old at the time.

We asked if he should be tested to see if he is a carrier or, God forbid, he has the disease and wasn’t presenting symptoms yet.

Adri’s neurologist, Dr. Parsons, encouraged us to bring him in to be checked out. After telling her a little about Santi, she was pretty certain that he didn’t have the disease.

After a while…….after some of the fog of Adri’s diagnosis lifted, we took Santi in, and Dr. Parsons tested him.

She took him through various tests of strength — had him push against her hand with his head, with his arms, with his legs; had him sit down, then get up quickly; had him run down the hall.

She checked his hands to see if he had the tremors that Adri has. She had him grab small things from her hand to test his motor skills.

She saw no symptoms – no indication that he has the disease.

We then asked that he be given a blood test to see if he is a carrier, and to confirm he doesn’t have SMA.

Doctor Parsons told us that it was hospital policy that unless a patient shows symptoms, they won’t do tests for SMA.

We couldn’t understand this.

We are the parents, our daughter has SMA, we’re both carriers. So, we wanted him tested.

She wouldn’t approve it. She explained to us that once the patient is of legal age, he or she can make their own decision to get tested.

When he’s old enough, Santiago can decide for himself if he wants to know if he’s a carrier, or even if he has the disease. Individuals with Type IV SMA, for example, may not exhibit symptoms until much later in life, if they exhibit them at all.

Dr. Parsons wasn’t rude or cold about the whole situation. She simply explained their policy and her thoughts on the subject.

Part of me understood.

Part of me wanted to tell her to go to hell.

We turned to our children’s pediatrician…..the best pediatrician in the world.

Dr. Robert Froehlke cared for our children as if they were his own. He laughed with us as we shared our experiences, comforted us during sickness and cried with us during Gaby’s cancer and Adri’s SMA diagnosis.

We asked him to approve the SMA test for Santiago. He knew us better than Adri’s neurologist and understood us better.

He never judged us or criticized us. He simply listened, shared any concerns he had and did what he thought was best for us.

Nice qualities to have in a doctor.

Even though he approved the SMA test for Santi, we still haven’t gotten him tested.

Gaby was adamant about getting him tested, but I wasn’t completely on board. She said she couldn’t stand not knowing.

Part of me didn’t want to know if he’s a carrier, and part of me — the one that doesn’t want to tell our neurologist to go to hell — still doesn’t want to know.

So soon after Adri’s diagnosis, I didn’t know if I could live with news that Santi may have the disease but just didn’t exhibit any symptoms yet.

Two years later, he still doesn’t show any signs of the disease. I have faith that he doesn’t.

I have to.

If he’s a carrier, like Gaby and me, then it isn’t critical we know right now.

He can find out when he’s older, if he wants to.

Then, I began to think about my immediate and extended families. Once we reach out to them, how many will want to know if they are carriers?

If they find out they do carry the faulty gene, how will it affect future decisions they make?

Whether to marry or whether to have children.

Will my oldest nephew — now in his early 20s — decide to get tested?

If he decides he wants to get married, will he ask his future spouse to get tested?

If they’re both carriers, will their feelings for each other change?

Will they decide not to get married? Not to have children? Maybe adopt instead?

Too many ifs.

Too many unknowns.

If Gaby and I had a crystal ball 10 years ago when we were getting married, and we saw what our lives would be like now, would we have made different decisions?

Of course, we can’t know the answer.

Nobody knows those answers, and it’s really silly to think about. Couples have many other challenges to face without dwelling on something they can’t change.

But, members of our family may very well face decisions like these, should they decide to get tested as SMA carriers.

I wonder what decisions they’ll make.

Such is life, I guess.

We make decisions based on what we know at the time.

And at the same time, we must decide exactly how much we want to know.

There’s no right or wrong answer…….that’s what makes it hard.

Our hope is for just one step; theirs is for one more breath

The National Institutes of Health (NIH) says Spinal Muscular Atrophy (SMA) is the disease closest to treatment out of hundreds of neurological disorders. And, dozens of leading scientists state that, with appropriate funding, there will be an effective therapy for SMA in less than five years.

Wonderful news, of course!

Problem is, many innocent babies fighting the disease are measuring their time in months.

Sadly, even weeks or days.

This reality hit me hard when I read an update on one of the more promising clinical trials by Isis pharmaceuticals, a company currently testing a drug in SMA infants and children.

Two bullet points in a press release made me realize the pain many families with SMA Type 1 children are going through as they deal with this horrible disease:

  • [Of seven infants], five are alive without the need for permanent ventilation. The two infants who have had an event (one death and one permanent ventilation) each experienced the event in connection with pneumonia.
  • Three of the infants…remain on study and had not yet reached their third induction dose on April 7. One infant died prior to receiving a third induction dose.

I found myself reading these lines over an over again.

My chest tightened slightly and my breathing accelerated as my eyes passed over the words: “one death” and “one infant died.”

Genetics were a curse……and a blessing


Trying to step toward daddy.

It’s difficult for me to get my head around the genetics of SMA.

Gaby and I gave our daughter the disease but it’s not the most severe, Type 1 form.

I don’t know exactly how our Adriana ended up with enough copies of the SMN2 gene to avoid a Type 1 diagnosis.

As a Type 2 SMA child, Adri’s muscles are weak and she can’t walk yet. But, there’s so much she can do.

She can roll on her own, throw a ball, feed herself (when we push her) and play games on her iPad.

She doesn’t need a breathing or feeding tube.

It’s because of this that we ask God to give Adri the strength to take a step, instead of to take a breath.

It’s because of this that, at this moment, I can hear her in the other room singing “He’s a Tramp,” as she and Santiago watch Lady and the Tramp.


Strong arms lifting her lollipop.

It’s because of this that Adri is not a bullet point in a press release.

Love now, for there may not be a tomorrow

I remember starting to research SMA when Adri was diagnosed.

Our doctors directed us to the Families of SMA website where we found volumes of information.

Sometimes more than we wanted to know.

The organization puts out a quarterly news magazine, and each issue features a Loving Memories section. Although the stories made me cry, I couldn’t stop reading about the children who lost their lives to SMA.

I was amazed at the young couples smiling with their babies, knowing they would most likely lose them to the disease months, or even weeks, later.

I couldn’t understand it…………then.


Strong arms holding Blacky!

But, I understand it now.

Their joy came not from thoughts of the future, or of what successes or failures their child would experience in life.

It came from living in the now.

Having the opportunity to love a creature they brought into this world, if only for a moment.

Experiencing the joy of loving something unconditionally and without boundaries.

In a strange way, maybe it’s a gift to live under such circumstances.

Of course, anyone faced with losing a child would much rather have the gift of a long life with that child.

Santi and Adri sleeping

Brother and sister at peace together!

But when you realize time is short before God calls your child home, you tend to love deeper and forgive easier.

Doctors have given us high hopes for our Adriana.

But, I’ve heard too many stories of how just one illness can bring an SMA child so close to death.

It doesn’t occupy my every thought, but I do think about it.

That’s when I do my best to offer up to God the hatred and silly worries that too often occupy my life.

And instead, I try to focus on what I should be focused on: cherishing every moment I have with those I love.


My daughter needs me, doesn’t she?

At some point, every parent realizes that for a child to flourish, one has to let go.

To be independent, free thinkers, children must explore on their own, make new friends (and enemies), make mistakes, fall down and pick themselves back up.

Thinking metaphorically, I have no doubt that when our children experience setbacks in life, they’ll be perfectly capable of “picking themselves up again.”

But, it’s harder for me to think in literal terms when it comes to Adriana’s special needs.

If she physically falls down, she can’t pick herself back up. The genes Gaby and I passed on to her simply won’t allow her to do that.

My instincts tell me that she’ll always need our help along the way, until they find a cure for spinal muscular atrophy (SMA) and she walks and gains the strength to function on her own.

IMG_0397It wasn’t until I saw Adriana in her music and art class that I caught a different glimpse of the future.

One where Adriana would still need help, but not necessarily from mom and dad.

Meet me halfway

Normally, Gaby takes Adri to her class. But for Mother’s Day, she needed to be with Santiago at his school for an afternoon of activities.

So, it was up to me to take Adri to class.

I’m slowly getting comfortable moving around  Lima. My “neighborhood” is getting bigger.  I’m teaching English part time and commuting to different parts of the city.

But, I still get anxious when I’m faced with new experiences – new places to go.

IMG_0398The first class I took Adri to was wonderful!

But, I was by her side the entire time.

All the other parents dropped off their kids and left. I was just too scared to do that.

The regular teacher was absent, and the substitute wasn’t fully aware of Adri’s situation.

I sat Adri on the mat where the kids play music and sing. The mat got crowded as more children joined the class.

My anxiety heightened as I pictured one of them accidentally bumping Adriana, causing her to tip over and hit her head.

I sat in the back (cape and all), ready to rescue her when she needed me.

I think the teacher’s assistant noticed my nervousness and didn’t question my staying in the room.

As the class progressed, I began to notice how engaged Adriana was. She wasn’t asking for me. She wasn’t shy. She was simply another 3-year-old, interested in what the teacher was teaching.

She needed a little assistance now and then.

Adri’s arms aren’t as strong, so she needed some help holding the instruments, or a little coaxing from the teacher to play the instrument.

For one of the activities, the teacher had an alligator muppet on her right hand, and each child was supposed to place a little toy inside the muppet’s mouth.

I was ready to jump in and help Adri lift her arm up, but I held back.

With all of her strength, Adri lifted the toy as high as she could. I prayed to God to give her a little more strength.

Just then, the teacher met her half way, bringing her hand down to meet Adri’s.

She met her half way.

A that moment in time, Adri didn’t need me. She was having fun all by herself!

The compassion and understanding that I believe are in every human being – whether we see it or not – were all Adri needed to succeed.

Granted, it may be a small task for some. But in my eyes, it was momentous!

We really don’t need you here

Yesterday, Gaby needed me to take Adri to her class again.

I got the typical butterflies I get when I have to do something out of my comfort zone.

I complained a little — because it’s what I do. But, I quickly stepped up to the task.

The first time I took Adri to class, Gaby drove us there. This time, we would have to take a taxi.

Taking a taxi in Lima is an experience worthy of its own blog post (or two), so I won’t go into details here.

Fortunately this time, it was a relatively painless experience.

snack time

Snack time with Adri at the head of the table.

I had Adriana in my arms, and my backpack and her Seat-2-Go on my back, as we headed for the corner to hail a taxi.

For every 10 cars on the road, about nine are taxis (slight exaggeration), so there’s never a wait.

The driver didn’t haggle over the fare, and we arrived in one piece….a true sign of God’s presence.

The regular teacher – Ms. Betsy – was there this time.

I put Adri’s Seat-2-Go on one of the chairs at the table. The seat allows her to sit at the table, strapped in, so she doesn’t lose her balance and fall.

I then sat her on the mat on the floor in the center of the class and asked Ms. Betsy if I should sit in the back, as I’d done the last time.

She said it was actually better if I wasn’t in the room.

I voiced my concern about Adri losing her balance and falling backward, potentially hitting her head.

IMG_0582She said they would take care of her, and if they needed me, they would call me.

They never called.

“We need to teach her independence,” Ms. Betsy reminded me.

A ray of light made it’s way through the clouds that day.

A glimpse into a future where Adri gets the help she needs…just not always from mom and dad.

Speak English? How’s $2 An Hour Sound?

We took a rather large leap of faith moving our family to Peru.

By many standards, our life wasn’t bad in Colorado.

We had a nice home.

We’d recently developed a small circle of friends with children the same age as ours. We were spending quite a bit of time with them.

Anyone who knows me knows that, for me, making friends is no small feat.

I had a job I actually enjoyed and that paid well.

We had decent health insurance.

After Adriana’s SMA diagnosis, we found many resources available to help us with this monumental change in our lives. Resources at Children’s Hospital, Medicaid, the state of Colorado…they all provided help.

But we couldn’t deny that Adriana was (and still is) reacting much better to therapy in Peru. That, along with the many hands available to help us here, made our decision to move easier.

Easier, but still not easy.

An hour’s work earns you a burger…….almost

One of my greatest fears about coming to Peru was finding a job. I knew moving here meant I would lose the job I had.

Quite often, I fast forward to when (and if) we return to the United States. I see myself again without a job.

I’ll be pushing 50.

I feel my hair turning grey just thinking about it. Or maybe it’s the hair falling from my head that I feel.

I’ve been out of work for a few months now.

Feels like an eternity.

Being a native English speaker, I’ve been exploring opportunities that allow me to use this skill in Spanish-speaking Peru.

I recently responded to an add in the newspaper that stated, among other things:

  • “Native English speakers needed.”
  • “Best pay in the industry!”
  • “Unlimited earning potential”

This was it. I found my salvation!

They contacted me almost immediately to interview for the position. My confidence was back…they must know talent when they see it!

I dressed in my best suit and tie and arrived early for the interview.

Red flag number 1

I entered what appeared to be an abandoned office floor.

If you’ve seen the movie Bruce Almighty, I felt like Jim Carrey’s character, Bruce, when he was sent to a job interview.

He arrived at an abandoned building, only to find one person there.

Turns out that person was God.

I searched everywhere for Morgan Freeman, but no luck.

[Side note: Morgan Freeman played God in the movie]

A woman at a front office greeted me and handed me a one-page application. Her accent sounded British, but she said so few words that it was hard to tell.

Red flag number 2

The woman sent me to the back part of the floor which was —  surprise — abandoned.

That’s actually not true.

There were about a dozen empty chairs and tables that kind of reminded me of my eighth grade classroom. There was a better view, though, as I stood gazing out from the 13th floor (another red flag).

Red flag number 3

A second woman, who looked like she may be ditching high school to be there, said she would be right with me.

This couldn’t be my interviewer, could it?!

She came back and sat down.

I started to get the light-headed feeling you get when you stand up too fast.

We started to go over the application. I honestly don’t remember what was on the application or how I filled it out.

My mind was conjuring up thoughts of a quick escape.

She began to explain the job.

Then, out of nowhere, she kicked me in the gut!

Not literally, of course.

Actually, I might have preferred an actual punch to the gut. At least I’d have an excuse to leave.

But instead, her words were a kick in the gut.

“If you work hard and meet your goals,” she said, “you can earn as much as 800 Soles a month!”

She said it as if she expected me to fall on my knees and beg her if I could start work that day.

Let me do the math for you.

800 Soles comes out to about $300 U.S. dollars a month.

Let me say that again, slowly.

800 Soles comes out to about $300 U.S. dollars a month.

Allow me to do some more math.

At 40 hours a week (maybe even more), that comes out to a whopping $2 an hour.

I was about ready to call Gaby and have her start house hunting in Miraflores (one of the more expensive districts in Lima).

Wait, it gets better!

The young child (I mean woman) proceeded to tell me that if I do really, really well, I could become a manager in a few months, just like she is!

That meant…………….wait for it……………..900 Soles a month!

I’ll let you do the math this time.

It’ll be fun!

All the fear I had about finding work in Peru just floated away…..and was replaced with sheer terror!

My head was spinning so hard as I was leaving, I almost ran into the teenager in shorts,  sandals and a t-shirt who was next in line to be interviewed.

Take a guess!

Can you guess the dream job that so highly valued native English speakers?

If you can, I’ll send you a Sol!