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

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.

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

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.

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.]

 

Note from God: Adri will attend preschool today

The stars aligned today and gave us a miracle.

Ok, maybe not a miracle, but indeed a joyous event….which in itself can be a miracle.

Gaby had just returned from taking Adriana to her physical therapy session. When she drove up to the house, Santiago’s school next door was preparing for a “march” to celebrate what’s called the “Semana de la Educacion Inicial,” which is a week of events to highlight the importance of preschool.

IMG_0637

Adri’s first preschool class

All the classes were lined up right outside the door, ready to march.

Adriana saw them and wanted to participate.

Gaby, who is much more in tune with Adri’s developmental needs, told her that she could follow the march in her wheelchair.

I simply would have carried her and followed the procession.

IMG_0630Adri was excited to be part of the march, as she enjoyed a bit of independence in her chair.

Lately it’s been a bit difficult to motivate Adri to use her chair, but this time, she wanted to do it all by herself.

She wanted to be a part of it all!

It didn’t end there.

When they returned, Adri was bringing up the back of the line in her chair.

IMG_0631She wanted it to continue. She wanted to follow the classes back into school.

So, we took her into the three-year-old classroom to participate in music class.

She sat in wonder of her new classmates, about 10 in all.

She moved her body to the music.

IMG_0635

Sleeping with Ms. Patty, as the other kids sleep on the floor

She pretended to sleep when the other kids did the same.

IMG_0639

Ms. Patty helping her with the maraca

She got help from the teacher, Ms. Patty, who last year was Santiago’s teacher.

She laughed when the others laughed.

She held the maraca when it was her turn to play music.

She watched her classmates jump up and down to the music.

My heart ached and Gaby cried as we wondered what she was thinking.

“Daddy, I want to jump,” she must have been saying to herself.

But, she never complained.

And, although she didn’t want to leave, we brought her home, and she was happy.

Gaby’s intention has always been to take Adri a couple of times a week to school, but the timing just hadn’t worked out.

God imposed his timing on us today, and Adri attended preschool for the first time!

IMG_0632

Her classmates were just as excited to meet their new friend

It was all unplanned by us, so in my mind, it was part of God’s plan.

And so we’ll continue down this new path we’ve been shown, anxious for every new experience!

And we’ll continue to pray that our hearts and minds are open to receiving the plans God has in store for us.

Much love to everyone!

Wheelchair? Not for my child, thank you!

My mind often replays the day we found out Adriana has spinal muscular atrophy (SMA).

Like scenes from a movie I haven’t seen in a long time.

I remember bits and pieces of dialog.

I close my eyes, and I see some of the characters that crossed our path that day.

I remember calling certain people to tell them the news: my parents and siblings, our friend Ruthie, my boss Linda.

I don’t remember all the words that were spoken, but I remember the act of dialing and holding the phone to my ear.

I remember telling our daycare provider, Robin. She helped us raise Santiago, and we were starting to send Adriana to her.

She runs her daycare out of her home, just down the street from the house we had in Littleton.

I remember the sadness in her face when I told her about Adriana.

Wheelchairs are for other people

One word I remember hearing that day was “wheelchair.”

swc_adri_mama

Adri began with her standing wheelchair. Here, she shows mom how to play one of her apps on her iPad.

It wasn’t spoken often, but it sat there in the back of my head most of that day, like an annoying fly buzzing around and around.

“Adriana will most likely need a wheelchair the rest of her life,” the neurologist told us.

I’m almost certain she said those words: “…the rest of her life.”

Maybe I planted the words myself.

We were devastated, and I may have been painting my own devastating picture.

I remember the drive back home from the hospital.

We were in our new Nissan Leaf, which we’d bought a few weeks prior.

Gaby and I started to talk about having to return the car because a wheelchair wouldn’t fit in it.

We’d need a large van.

It was a short conversation, but it was an example of what our lives would be like from then on. Lives with new unknowns and new uncertainties that would lead us to make decisions long before we needed to.

I don’t know when it happened, but at one point we decided that putting Adriana in a wheelchair meant we were giving up on her.

That we were giving in to the disease and all hope was lost.

That indeed she would never walk.

I remember people commenting that we shouldn’t think about wheelchairs or think in terms of “handicapped accessibility” or “special needs” because Adriana was going to walk.

Those comments always seemed to flow easier from those who didn’t live with our reality.

Those who weren’t facing the same decisions we were.

They meant well, of course, but they didn’t quite know what we’re facing.

I would liken it to me – as a man – describing what it feels like to give birth.

Until I actually experience it, I really have no clue.

I mean, I have lower back pain, but it doesn’t really qualify me to describe labor pains.

It’s hard to accept, but we do what’s hard

Gradually, we began to realize that Adriana needed to learn independence. We also realized that, as she grew, it wouldn’t be possible for us to carry her everywhere.

wc_adri_turning

Adri maneuvers with both hands as big brother, Santi, keeps a close eye.

She would need a wheelchair.

As much as I wish I could delete that last sentence, I now realize we can’t.

She would need a wheelchair.

And so we began….slowly.

At first, we drove the chair from the controls in the back and just had Adriana take in the experience.

There were times she seemed to enjoy it. Other times, she would cry when we told her we were going for a ride.

Then, she started controlling the chair.

wc_santi_adri_discussing

A serious discussion between brother and sister.

We were always nearby, in case she came too close to a wall or a parked car.

Her arms would tire quickly, as she struggled with certain movements. With only her right hand on the control, she found it hard to steer the chair to the right.

She learned to use both hands when she couldn’t control the chair with one.

Adri’s acceptance

Little by little, Adri’s gaining confidence with her chair.

She’s getting good at making turns, and she knows when she’s coming close to hitting something or approaching a bump in the sidewalk.

She stops, changes directions and continues on…quite patiently.

She also seems to realize that she herself is creating the motions. Although her legs aren’t taking her, she’s moving herself from point A to point B.

It’s going to take a while because she still prefers that her cousins or I

wc_santi_adri_walking

An agreement is reached, and they continue together to their aunts’ house.

carry her.

Her skills of manipulation are honed, and she’s good at getting what she wants.

A little whining here or a crocodile tear there, and we’re quick to take her out of the wheelchair and carry her where she wants to go.

I’m more than happy to do it.

Until that day comes when she breaks free of my embrace and walks with her brother, hand in hand.