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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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

Take a moment to enjoy CHRISTmas

Alonzo distributes gifts

A thankful child receives his gift!

A vicious disease is no match for the human spirit.

The disease may tear a body apart.

It may extinguish a life that’s just begun. Or a life that’s seen a thousand sunsets.

But it will never extinguish the human capacity for kindness, or a child’s smile, or a parent’s undying love.

Santiago distributes gifts

Santiago distributing gifts

Anyone suffering from cancer, I believe, has the right to be angry. To ask the question, “why me?”

And although cancer is beatable, it is an unfair battle.

The medicines and treatments doctors use have the potential to do serious damage to other parts of the body.

And, it’s particularly unfair when the disease’s victim is an innocent child.

Adri distributing gifts

Adriana helping distribute gifts

We recently visited a center here in Lima called la Fundacion Peruana de Cancer.

The foundation’s mission is to raise the standards of care and treatment of cancer patients in Peru.

This Christmas, a group of our friends got together to donate gifts and snacks to the cancer patients currently under the foundation’s care.

Family distributing gifts

Tia Susy, cousin Nicolas and Adri with a new friend.

A family friend took the lead in coordinating the effort, and a few of us visited the center to distribute presents and spend a little time with the families currently living there.

We took Santiago and Adriana along so they could enjoy the experience and hopefully learn the important lesson of giving.

You know, we receive many reminders on Facebook or other social media to keep “Christ” in “Christmas”.

It doesn’t take much, really.

A toy, a piece of cake or some candy. A smile, a hug or a kiss.

Santi distibuting hugs

Hugs all around

A prayer for someone in need.

Christmas will come and go.

But Christ is always here.

Just take a step back, breathe and look into the eyes of your child or your parents or your friends……and you’ll see Him.

Have a wonderful Christmas everyone!

Family and friends

Alonzo, Rocio, Sister Lucia, Susy, Nicolas, Adri and Santi.

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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

 

Only God could train a humpback

Months ago, I wrote about a spiritual experience I had here in Peru.

We were at a party at a friend’s beach house near Lima.

The Pacific Ocean, Mancora

Mancora: a view of the Pacific from our hotel, Los Corales.

It was at a time when I was really questioning our move to this country and doubting whether it was a good decision.

Looking out at the Pacific Ocean, I felt a sense of peace.

God’s peace.

The pisco I was drinking probably contributed to my peace-like state, but there was definitely something more.

I was surrounded by people simply enjoying each other’s company. Enjoying the moment.

Causa

Special anniversary dish (Causa) from the staff at Los Corales.

It was then I realized that if we spend this journey called life regretting the past or fearing the future (or both), we will have missed out on what’s important.

God’s gift of family, friendship and human kindness.

God’s been working on his tan

On September 4, Gaby and I celebrated our 10th wedding anniversary.

whale watching tour

On board our whale-watching boat

As a gift, our family here in Lima took care of the kids while we snuck away for a long weekend.

We spent several days in Mancora, a beach resort in northern Peru.  We had gone there back in February and had fallen in love with the place.

We stayed at the same hotel, Los Corales, where Iman (the head waiter) and Sylvia (the manager) took care of us.

It’s slow season, and the place was practically deserted.

Mancora Peru: dolphins swimming along boat

Mancora Peru: dolphins swimming along boat

It’s also whale-watching season, and we took a tour that didn’t disappoint.

We saw dolphins, sea lions, turtles and, of course, whales.

This time, it was Gaby’s turn for a spiritual experience on the Pacific.

He’s always listening

One of the fixtures of these resort beaches are the vendors that come up to you selling jewelry, pottery, hats, sunglasses, clothing, massages and ice cream…….not necessarily in that order.

IMG_1563Our first day there, a psychic came up to Gaby offering her a tarot card reading.

She was tempted.

She wanted to know if our Adri would ever walk.

The next morning, as Gaby was running along the beach, she felt deep in her heart that it was the devil tempting her into believing that anyone, other than God, knew the answer to that question.

Adri, Santi and Diego in Pachacamac

The kids didn’t miss us a bit. Adri and Santi with cousin Diego in Pachacamac.

Will Adriana ever walk?

The doctors don’t know the answer.

We don’t know the answer.

Gaby realized — at that moment on the beach — that she need only trust in God…..not a psychic.

“God has always provided,” Gaby told me. “What reason do I have not to trust Him anymore.”

As she continued her run, Gaby decided to ask God if she could see another whale.

A whale then appeared about 100 yards out!

Mancora Peru: whale breaching

Mancora Peru: whale breaching

She then asked God to make it breach.

Just then, it jumped out of the water!

Finally, she asked for Adriana to walk.

She knows that answer will come in time.

Gaby came to that peaceful realization running along the Pacific. That same ocean that brought me peace months ago.

I got help from a little pisco.

Gaby just needed a whale.

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.

Note from God: You’re exactly where you’re supposed to be!

Cousins!

Santi and Adri with their 2-week old cousin, Leonardo!

As we got more and more serious about moving to Lima, we leaned more and more on God.

We asked him to guide our decision.

We asked him for the wisdom to trust that he will always provide what we need.

Now that we’re here,  I continue to ask him for strength and the faith that we made the right decision.

We’ve had our setbacks, and we’ll have more.

But, when I see our children’s faces, I realize that, right now, this is where we’re supposed to be.

I hope the same realization comes to each of you!

[Since Adri started hippotherapy, a little less than a year ago, she’s never ridden by herself. This week, her therapist got off the horse, and for the first time, Adri rode Facunda solo!]

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.

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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.

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

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

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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!

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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!