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

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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.

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

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.

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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!

A glimpse of Adri’s battle against SMA

The other day, I was talking to my friend Joanne from Colorado.

We worked together when I first moved to Denver in 1998, and we remain friends.

She asked me to describe our home and our neighborhood here in Peru so she could have a sense of our life now.

She told me that she pictured us living in an adobe house with lots of open space.

I then began to explain the chaos that is Lima; 8-10 million people crammed into about 1,000 square miles (about 40 miles north to south and 25 miles east to west).

After I tried describing our home and neighborhood,  Joanne suggested I post more pictures.

I then realized many of you might enjoy seeing a little bit of our lives instead of just reading about it.

So, here goes.

Unique battles, common hopes

Every child stricken with spinal muscular atrophy (SMA) has a unique battle.

Some need a tube to eat or breathe…….or both.

Some need help maintaining a seated position.

Others can’t sit at all.

Some need help holding their head up straight.

Their brilliant minds are trapped in a weak body that’s getting — or will eventually get —  weaker.

What’s not unique is every victim’s and every family’s hope for a cure.

A treatment within the next few years that will give every patient greater strength and mobility, the ability to experience more out of a longer life, and quite literally, the chance to hold their heads up high.

Every Wednesday and Friday morning, we take Adriana to physical therapy at an institute called Arie, which we were able to find through Gaby’s friend.

Each session is a race against the clock to find a cure. To keep her body and her muscles moving so that when we have a treatment, she has a stronger starting point to build her body back up.

Some children face tougher battles than Adri, and others face easier ones.

All I know is that all these kids are much stronger than I’ll every be.

The clips

Here you’ll see, through a series of video clips, a little bit of Adri’s battle.

I tried to keep each video under 30 seconds.

The whole process takes a couple of hours, round trip, but I know you don’t have time to witness all of it in one sitting.

But hopefully you’ll enjoy seeing a few clips of how Adriana is progressing.

Her therapists are happy with her progress, and of course, so are we!

Enjoy!

GETTING THERE: These first clips show you our commute to therapy:

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GETTING READY: These next clips show Gaby getting Adri ready for therapy.

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THE THERAPY: Therapist Zeida takes Adri through various exercises designed to help her maintain her strength.

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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.

Anything You Can, I Can Do………In My Own Better Way

Whenever I read someone’s story about life with their special needs child — or life as an individual with special needs — a common theme tends to surface.

“I may not do things the same way, but I can do them nonetheless.”

The same holds true for our Adriana.

When her brother has something, she wants it.

When her brother does something, she wants to do it.

At the park

Enjoying a sunny April afternoon at a local park, before cloudy fall and winter days set in.

She sees Santiago jumping on the bed and says, “I want up on the bed.”

So I wrap my hands around her torso and lift her up and down, as they hold hands and jump together.

She sees Santiago running after a dog in the park and says, “I want with Papu (her nickname for Santiago).”

So I hold her in front of me with her back against my chest, and we run after Santi and the puppy.

We realize there are things she can’t do….just yet.

So for now — on this Good Friday, when we remember Christ’s ultimate act of love for us — I pray for the strength and wisdom to always tell Adriana she can do it…in her own special way.

Enjoy the pictures of Adri taking in life, her own way!

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Muppet show

Santi and Adri enjoying a Saturday muppet show at the local library.

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Adri's favorite flowers

Adri picking flowers by herself

Baking time

Adri and Santi helping mom bake

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Rolling

Adri rolling down the hill with big brother

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Check out the backdrop in this picture

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.”

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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.

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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.

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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.

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.

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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.

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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.

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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!