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

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!

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!

IMG_0388

 

 

 

IMG_0390

Muppet show

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

IMG_0363

IMG_0375

Adri's favorite flowers

Adri picking flowers by herself

Baking time

Adri and Santi helping mom bake

IMG_0337

Rolling

Adri rolling down the hill with big brother

Rolling

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.”

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.