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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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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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 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

 

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.

Our hope is for just one step; theirs is for one more breath

The National Institutes of Health (NIH) says Spinal Muscular Atrophy (SMA) is the disease closest to treatment out of hundreds of neurological disorders. And, dozens of leading scientists state that, with appropriate funding, there will be an effective therapy for SMA in less than five years.

Wonderful news, of course!

Problem is, many innocent babies fighting the disease are measuring their time in months.

Sadly, even weeks or days.

This reality hit me hard when I read an update on one of the more promising clinical trials by Isis pharmaceuticals, a company currently testing a drug in SMA infants and children.

Two bullet points in a press release made me realize the pain many families with SMA Type 1 children are going through as they deal with this horrible disease:

  • [Of seven infants], five are alive without the need for permanent ventilation. The two infants who have had an event (one death and one permanent ventilation) each experienced the event in connection with pneumonia.
  • Three of the infants…remain on study and had not yet reached their third induction dose on April 7. One infant died prior to receiving a third induction dose.

I found myself reading these lines over an over again.

My chest tightened slightly and my breathing accelerated as my eyes passed over the words: “one death” and “one infant died.”

Genetics were a curse……and a blessing

IMG_0328

Trying to step toward daddy.

It’s difficult for me to get my head around the genetics of SMA.

Gaby and I gave our daughter the disease but it’s not the most severe, Type 1 form.

I don’t know exactly how our Adriana ended up with enough copies of the SMN2 gene to avoid a Type 1 diagnosis.

As a Type 2 SMA child, Adri’s muscles are weak and she can’t walk yet. But, there’s so much she can do.

She can roll on her own, throw a ball, feed herself (when we push her) and play games on her iPad.

She doesn’t need a breathing or feeding tube.

It’s because of this that we ask God to give Adri the strength to take a step, instead of to take a breath.

It’s because of this that, at this moment, I can hear her in the other room singing “He’s a Tramp,” as she and Santiago watch Lady and the Tramp.

IMG_0459

Strong arms lifting her lollipop.

It’s because of this that Adri is not a bullet point in a press release.

Love now, for there may not be a tomorrow

I remember starting to research SMA when Adri was diagnosed.

Our doctors directed us to the Families of SMA website where we found volumes of information.

Sometimes more than we wanted to know.

The organization puts out a quarterly news magazine, and each issue features a Loving Memories section. Although the stories made me cry, I couldn’t stop reading about the children who lost their lives to SMA.

I was amazed at the young couples smiling with their babies, knowing they would most likely lose them to the disease months, or even weeks, later.

I couldn’t understand it…………then.

IMG_0466

Strong arms holding Blacky!

But, I understand it now.

Their joy came not from thoughts of the future, or of what successes or failures their child would experience in life.

It came from living in the now.

Having the opportunity to love a creature they brought into this world, if only for a moment.

Experiencing the joy of loving something unconditionally and without boundaries.

In a strange way, maybe it’s a gift to live under such circumstances.

Of course, anyone faced with losing a child would much rather have the gift of a long life with that child.

Santi and Adri sleeping

Brother and sister at peace together!

But when you realize time is short before God calls your child home, you tend to love deeper and forgive easier.

Doctors have given us high hopes for our Adriana.

But, I’ve heard too many stories of how just one illness can bring an SMA child so close to death.

It doesn’t occupy my every thought, but I do think about it.

That’s when I do my best to offer up to God the hatred and silly worries that too often occupy my life.

And instead, I try to focus on what I should be focused on: cherishing every moment I have with those I love.