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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A very holy October

Adri, Santi and mom at Las Nazarenas

At the Sanctuary Las Nazarenas, the main gathering place for El Senor de los Milagros. Adri in her purple robe, the main color of the celebration.

October is a very important month in Peru for the Catholic faithful. The entire month, the country celebrates El Senor de los Milagros (Lord of Miracles).

For me, the stage was set early in October when we were at a birthday gathering in Pachacamac, about 45 minutes south of where we live in Lima.

Gaby’s family has some property there, which they use on the weekends for occasional get togethers.

It was a typical celebration. Nothing out of the ordinary. Until a gentleman approached me as I was carrying Adriana around the property.

I’d met him before, and we’ve held brief conversations at other gatherings. He’s the father of my sister-in-law’s good friend.

St. Jude

St. Jude prayer card

Fairly recently, he was diagnosed with stomach cancer, and he’s been through a difficult time, as you can imagine. I would guess he’s in his mid-70’s.

Adri and I were off by ourselves, looking for snails or roly-polies or something like that, when he approached us.

He asked me if I knew who St. Jude Thaddeus was.

Being Catholic, I felt I should know. But there was no way I was going to lie, for fear of being struck down by lightning.

He proceeded to tell me that St. Jude is the saint we pray to in desperate situations. He was one of the 12 apostles.

He was martyred, suffering death by decapitation for his belief in Christ.

Jude2He told me I should pray to St. Jude every day. He pulled a laminated prayer card out of his wallet, which he gave to me as a gift.

He didn’t mention Adriana’s disease. He never has, to me anyway.

But, I knew what he was talking about.

As a man suffering from stomach cancer, I certainly understand his devotion to St. Jude. Especially during his difficult treatments.

I know from Gaby’s cancer, things can and do feel desperate and hopeless.

His faith was evident, as he touched Adri’s legs and her head with compassion and a smile crossed his face.

So, I pray.

Although I don’t necessarily view Adri’s condition as desperate, compared to others with more serious conditions, I still pray.

Perhaps selfishly.

Senor de Los Milagros

Sanctuary of Las Nazarenas

Sanctuary of Las Nazarenas

On October 24, we visited the Sanctuary of Las Nazarenas in downtown Lima. A special mass was held for patients of Arie, a facility where Adriana receives physical therapy.

A mother whose child also gets therapy there invited us to attend.

All month, you can go to services throughout the day to pray to Christ, the Lord of Miracles. It’s really quite encouraging and powerful to see so many people joined in prayer.

We were able to take Adri and Santi right up to the large statue at the front of the church to say our prayer and let them touch the statue with their little hands.

Senor de los Milagros

Adriana and mom at the foot of the Lord of Miracles.

Celebration of the Mass

Crowds fill the church

Many parishes have their own smaller statues that they use during processions in their own districts.

Last year, I was honored to be able to help carry the statue for a short distance down our street.

I thought of Adriana.

I thought of Christ carrying the cross to his own crucifixion.

And, I plan to do the same this week when the procession passes our house again.

I’ll pray for a cure. I’ll pray for children with SMA.

I’ll pray for a miracle.

Dad and Santi

Dad and Santi in last year’s procession down our street

 

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.

 

 

 

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!

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!

A Woman’s Strength

To say that my wife, Gaby, has been through a lot the last several years is a bit of an understatement.

Since her cancer diagnosis in 2010, at age 35, her life has taken turns it wasn’t supposed to.

Days after the devastating news, we found out Gaby was pregnant with Adriana.

gaby_candelarias_christmas 2010

Christmas 2010 with our “sisters” LeTricia and Monica! Gaby six months pregnant with Adri and just finishing first round of chemo.

The joy of having our second child was overshadowed by cancer.

We made decisions quickly.

Because Gaby was pregnant, she couldn’t risk the invasiveness of a mastectomy, so she decided on a lumpectomy.

Thankfully, she found the lump early – at Stage 1b – so Dr. Kercher, our surgeon, was able to remove it with great certainty that all the cancer was gone.

Then, Gaby had to decide on chemotherapy.

One doctor we visited suggested Gaby wouldn’t need it because she found the lump so early.

All other doctors recommended chemotherapy.

Ultimately, Gaby had to decide.

gaby_adri_easter

April 2011, a month after Adri’s birth. Gaby set to start round two of chemo in a couple of weeks.

And as she put it, “with two small children, I don’t want the cancer to come back.”

With the help of our friend Carinne, we found Dr. Virginia Borges at University of Colorado Hospital. Dr. Borges is a specialist in treating pregnant women with breast cancer.

In Dr. Borges, Gaby found a friend.

Gaby would go through chemotherapy while pregnant.

It would have to begin in the second trimester, after Adriana’s major organs had developed in the first trimester.

And the chemotherapy medication was different for pregnant women – nasty enough to kill the cancer, but proven safer for the baby.

Bit of irony there.

Gaby still had to decide whether to have radiation on the breast; but with the pregnancy, that decision could be held off.

So the plan was:

  • Dr. Kercher performs the lumpectomy.
  • At the beginning of the second trimester, Gaby would begin chemotherapy which would last until the beginning of the third trimester.
  • Then after Adriana was born, Gaby would go through another round of chemotherapy for another 12 weeks.
  • In that time, Gaby would think about radiation.

If she chose chemotherapy and/or radiation after the birth, she would have to stop breastfeeding.

She could also choose a mastectomy, which again meant no breastfeeding, but it also meant no radiation therapy.

It’s safe to say that Gaby had a few things to think about.

In the end, though, things did go according to plan:

  • Dr. Kercher removed the lump, after which she told me Gaby was “cancer free.”
  • Gaby started her first round of chemo at approximately week 13 of the pregnancy.
  • She gave birth to Adriana on February 21.
  • Gaby started chemo again in April, just before her birthday…….what a gift, huh?
  • Gaby then decided on a double mastectomy, which was performed six weeks after her last round of chemo ended.

Sounds simple on paper.

Even as I tap my memory to write this, I conjure up scenes of our life that I wish would die, but probably never will.

Gaby nauseous and vomiting – almost daily – first from the morning sickness and then from the chemo.

Gaby crying as we shaved her head…..her desire to enact some sort of control over what was happening by removing her hair before the chemo did.

The physical pain of her double mastectomy and the emotional pain, not being able to carry her children

I completely forgot – until now – about the intravenous fluids we had to give Gaby at home. With Gaby vomiting and unable to eat very well, it was important she received fluids. So I learned how to connect tubes to her port so bags of fluid would pass to her body.

During the lumpectomy, Dr. Kercher had inserted the port (which was used to feed Gaby the chemo) into a vein in Gaby’s upper chest. Instead of poking Gaby at each chemo treatment, they accessed the port.

gaby_brenda_oneyearsurvivor

Summer 2011: celebrating one year cancer free with our friend Brenda!

I remember how happy Gaby was when they finally removed the port after everything was over. After all the treatments and surgeries.

She felt free…..like there was no longer a connection to the cancer that was once in her body.

That’s also the reason Gaby decided on the double mastectomy.

She didn’t want to let cancer have another shot at her body.

Not with two small children – and a husband – to raise.

As a man, I can only imagine the physical and emotional pain Gaby went through…..and at times continues to go through.

Sometimes I don’t want to imagine.

I always knew Gaby was strong. It was one of the things that made me fall in love with her.

But, I never knew just how strong she was until the cancer.

I never knew how strong her faith in God was and still is. It has strengthened my faith.

It’s the faith I’ve always seen in others…….our parents, aunts and uncles, close friends.

gaby_sfc_christmas 2011

Christmas 2011 with our small faith community friends! Their love and prayers helped us make it through it all!

But the selfish person that I am, I never found a reason to reach out to God. I had faced few adversities in life and never reached out for help, or worse, to thank Him.

But He’s the reason we’re still here, fighting every day.

The prayers, the undying love of family and friends, the acts of kindness are all signs of His presence.

In my weakness, which is ever present, I forget and turn away.

But when I take time.

When I stop complaining.

When I see my beautiful wife and children.

I turn back around, and He’s there.

Arms wide open, ready to catch me.

A Small Step Toward “Normal”

It’s hard for me to think about Adriana going to school by herself, without her mom or me by her side.

The thought of her in a classroom with a dozen or more kids — without someone there to lift her up if she falls over — terrifies me.

But of course, it will happen. She will go to school.

She will succeed and make new friends. She will fail and cry.

She will be strong. She will be weak.

She will be a kid.

Her first class

artclass_adri_storytime

Adriana’s art class starts with story time. Cushions at her side and back keep her from falling.

This week, we took what I think is a huge step in Adriana’s life.

Gaby enrolled Adri in a summer art class at one of the local libraries, and Monday was the first session.

Adri’s first “class”.

During story time, the kids gathered on mats on the floor. Gaby sat Adri at the front and placed cushions at her side and back to keep her from falling.

Isabella, who is a classmate of our son Santiago during the regular school year, is taking this same class. She sat next to Adri and was very protective of her.

It’s a wonderful feeling when other children see Adriana and want to be near her.

Kids seem to have a natural kindness about them and a desire to help when they think help is needed.

Adri was attentive during story time. She didn’t participate when the teacher asked questions, but that’s o.k.

I have a sense that soon, the teachers won’t be able to keep her quiet.

The art project

artclass_adri_table_isabella

Adriana and Isabella getting ready for their art project.

Next, the kids moved to the circular tables to do some artwork.

We have a positioning seat for Adri called a Seat2Go. It’s designed for special-needs children, and has a belt that straps around her chest to keep her from losing her balance.

She sat patiently and participated without a problem.

The project involved some painting, as Adri brushed glue onto a picture and then applied glitter on the glue. With painting, she exercises her fingers, hands and arms, which improves her fine motor skills.

Slowly letting go

Gaby was present the whole time, but she tried to make herself as invisible as possible.

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Adriana applying glue to her picture.

Adri would look to her occasionally, but Gaby was sure to direct her attention to the teacher if she had a question or problem.

Adri was fascinated when she asked the teacher a question, and the teacher actually answered her!

Her mind, which is in no way affected by spinal muscular atrophy (SMA), was no doubt absorbing every experience (as tiny as they may seem).

What’s most important is that she’s now part of a group of classmates working and learning together.

We’re starting her off slowly – just two days a week for a couple of hours at the most.

Adri does get tired, even though the physical work seems minimal. Her muscles can only take so much at a time.

Signs of strength

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Adri showing off her painting from today’s second class.

With a summer full of therapy and activities, she’s up to the challenge, and she’s showing signs of greater strength.

Just yesterday, I was holding her with her back against my chest.

I placed her feet on a short wall and told her to push with her legs.

Normally, I feel a slight push, but this time she pushed strong enough to make me take a step back.

Seems small, I know.

But I pray for the day when she knocks me over!