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.

 

 

 

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.

Ok, Yoga, Make Me Healthy Again

He who is completely without stress exists solely in works of fiction.

Since our move to Lima (and for quite sometime before), stress has occupied a large part of our lives.

Gaby’s cancer, Adriana’s diagnosis and the transition to a new life are all the perfect setting for stress to plant its seeds and grow.

With help and prayers from you, our family and friends (and strangers), we’ve overcome the hurdles so far!

A new realization

Yesterday was a wonderful day, as some of you may have read!

Adriana experienced preschool for the first time, and we glimpsed the bright future we know she has ahead of her.

I came to the realization, however, that if I don’t take care of myself physically and emotionally, I risk the chance of not being around to see our kids grow up and have their kids.

I risk the chance of not seeing the cure for SMA and Adriana’s first steps.

Emotionally, I feel like I’m in a very good place. As I mentioned, your prayers and support — and my faith in God, although tested all the time — have strengthened me!

Physically, though, I’m nowhere near my happy place. And, I seemed to have lost the directions to get back.

I’m not in horrible shape. In fact, I just had some bloodwork done here in Lima, and my numbers are very good. Better than they were in the states.

[Aside]

Secretly, I was hoping they’d be worse so I could make the excuse that we need to move back home, for the sake of my health. (Only kidding………..sort of.)]

[End of aside]

My body, however, is one big, tight ball of stress. I’m in constant pain.

I know what you’re saying: “Your getting old.”

My response? “Shut up!”

Photo on 5-29-14 at 11.48 AM

My butt should be much higher, back straighter, and I think my feet should be flat on the ground. I”m going to need more than 30 days.

Anyway, it’s time to make things right……for me and my family!

So today, I started a 30-day yoga challenge on YouTube.

Please send me any prayers, positive thoughts or anything else you can muster up to help me see it through!

Photo on 5-29-14 at 11.47 AM #2

My lifted leg should be pointing toward the ceiling. Yes, that’s right, I said ceiling.

Day 1 realizations

  • My downward-facing dog pose (which should look like an inverted V) is an embarrassment to the practice of yoga (see accompanying photo).
  • Every time the instructor says, “now if this doesn’t quite feel comfortable, try doing it this way,” she’s talking directly to me. Like she knew I’d be attending.
  • Sitting cross-legged on the floor is not supposed to be painful.
  • A quote from one of my favorite TV shows will be resonating loudly during this challenge: “My body doesn’t do that without booze.”

Wish me luck!

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.

Where’s Our Miracle?

The coming of the New Year in Peru means weekends at the beach.

I remember Gaby commenting, more than once, how boring she thought Denver was compared to Lima.

“There’s nothing to do here,” she would complain.

I’d ask her what we’d be doing if we were in Peru.

“We’d be at the beach,” she’d respond, with a smile on her face.

“Yeah, but doing what?” I’d ask.

“Nothing, we’d just be at the beach.”

I’d give her my customary eye roll……..after she turned her back to me, of course.

Now, Peru does have some beautiful beaches. But the Pacific is a bit cold for my taste, and the waves are quite strong compared to, say, Miami or Fort Lauderdale. At least that’s been my experience. 

But going to the beach is what they do in Lima, so the best thing I can do is suck it up and get used to having sand in every part of the car, house, etc. for the next three or four months.

This past weekend, we went to a beach called Asia. Some friends of the family were throwing a birthday party at their condo, and we were invited.

The waves at this particular beach are really too strong for the kids, but luckily the complex had a nice swimming pool.

Santiago slipped on his inflatable vest and had a ball with his cousin and with a new friend he made at the pool.

I’ve mentioned before how Adriana loves the water. So, we’re thankful for any pool time we can get. She doesn’t even realize what wonderful therapy she’s getting as she moves her arms and legs, free from the constraints of gravity.

It was idyllic.

After swimming with the kids, we went to the party.

I knew many of the guests because we often get invited by the same group to their social activities, which are pretty much non-stop.

It’s a wonderful group of people, quick to laugh and genuinely concerned for each other’s well being.

My drink of choice for the evening was a chilcano, which is ginger ale, a twist of lime and Pisco, a common Peruvian liquor made from grapes…..kind of like what tequila is to Mexico.

The Pacific Ocean: Our New West

After a while, I found myself – off by myself – looking out at the Pacific Ocean, just out the window.

I looked at the sand, then the water, then the waves coming in, again and again, and then out into the gray vastness that was (and is) the Pacific.

I was in a Pisco-induced awe!

I mean, we used to live in Denver, Colorado, so the mountains out there to the west were pretty impressive.

But, with the mountains, there was a finality to them, in my mind.

You could see the tops. And, if you drove west for five or so hours, you reached the other side.

With the Pacific, there was no end.

I mean, of course there’s an end somewhere out there with a piece of land or another ocean, but this sucker’s huge.

[Just for reference, I’m about three drinks into the evening at this point.]

Then, the enormity of the world started to weigh on me.

As we drove back to Lima, I noticed the hillsides lined with dilapidated homes (if you can call them homes).

They’ve always been there; I just happened to fixate on them this time.

There are millions of people in Lima…..a great many of them are poor.

There are billions of people in this world….a great many of them are poor!

And, who knows how many are praying for their miracle to come true, just like we are with Adriana….the miracle that she’ll walk soon.

What makes us so special that God would grant us our miracle?

I have no answer.

Then I started to question: have we already been granted our miracle – or miracles?

God’s presence

Gaby was diagnosed with breast cancer almost at the same time Adriana was conceived.

One of the first tests the doctors wanted to perform was a PET scan, where they would have injected radioactive material into her body.

The nurse who was going to perform the test asked Gaby if she might be pregnant. We had been trying for a second child, but Gaby didn’t think she was pregnant and told the nurse that.

Gaby was really only thinking about the cancer diagnosis she had just received.

The nurse refused to do the PET scan without confirming that Gaby was not pregnant.

So, Gaby went to Walgreens, bought a pregnancy test, went back to her office and – shortly thereafter – found out she was pregnant with Adriana.

What would have happened had the nurse gone through with the PET scan? What damage would the radiation have done?

Was God watching over Gaby when our nurse refused to give her the scan?

Of course, you might say the nurse was just doing her job….confirming a young woman is not pregnant before giving her a PET scan.

I will always feel that God had a hand in it.

Or, did God grant us a miracle when Gaby had the dream that caused her to check for the lump in the first place? The dream that something was wrong and she better visit the doctor?

With a Stage 1B diagnosis, Gaby caught it early enough and she’s now cancer free.

Was that the miracle we get in this lifetime?

Or, is it the fact that Adriana survived Gaby’s chemotherapy while in her mama’s belly?

Or, the fact that Adriana has SMA, Type 2 with enough copies of the SMN 2 gene that allow her to breath on her own, or eat through her mouth instead of through a tube in her stomach?

So many beautiful, innocent Type 1 babies never make it to their 2nd birthday.

Is that our miracle?

Or is the miracle being able to see Adriana crawl, if only for a short time, before the disease took that away?

adri_crawling

Adri at about a year old, when she could still crawl.

Or, did the miracle happen this week when, for a few seconds, she stood by herself with the help of leg braces?

I guess in the end, it doesn’t really matter if these were miracles or not.

We’ll continue to pray to God for a miracle because, the way I see it, he’s the only one in the business.

adri_standing_treadmill

Adri standing on a treadmill with the help of leg braces.

Only now, I’ll try to be a little more open to what form the miracle may take.

It’s amazing what a little Pisco and a lot of ocean can do.

Adriana working with her therapist

The Journey Begins

In June 2010, my wife Gaby was diagnosed with breast cancer. She was 35 years old.

It was a sunny, summer day in Denver. I was sitting in mass. Right after she found the lump and went for a biopsy, I began attending mass daily. I was working in downtown Denver, and the church was a couple of blocks from my building. Our prayer activity went into high gear, as it usually does when we’re faced with potentially bad news.

I think I was listening to the homily when I felt my phone vibrate in my pocket. The butterflies in my stomach sprang to life as I stood up and rushed out the back of the church. I was expecting her to call at any time with the biopsy results. I answered just as I pushed the door to go outside. I knew as soon as I heard Gaby’s voice that our prayers were not answered; or at least, not in the way we wanted them to be answered.

I remember bits and pieces of the next few hours. I remember getting on the train to go back toward our house. I remember calling my parents. I remember starting to cry with my dad on the phone. And, I remember his words, “It’s ok, it’s not the end of the world.” Though his words may seem insensitive as I write them on the page, they were actually very comforting and reassuring. Dad would never lie to me.

I didn’t realize it at the time, but now I know he was right. My mom is a breast cancer survivor, so my dad knew where of he spoke.

It wasn’t the end of our world.

The end would come two years later, in July of 2012, when our then 17-month old daughter, Adriana, was diagnosed with Spinal Muscular Atrophy, Type II. She had not yet walked. She was crawling and cruising around furniture, but she started to struggle with even that. Initially, we simply told ourselves that she was slow in that area and would walk any day now.

But it seemed with every doctor visit, our pediatrician’s face grew more concerned. Gaby and I both saw it. He ordered testing; an MRI, a muscle scan, blood tests. My wife received a call that the neurologist at Children’s Hospital wanted us to come in the next day. Gaby was hysterical, and my stomach ached, trying to imagine what could be wrong.

At Gaby’s insistence – and she can be pretty insistent – we went to see the neurologist that day, and that’s when they gave us the news.

“Adriana may stand. She may be able to take a few steps. But, she will likely never walk.”

Gaby cried hard; I sat silent, holding Adriana, trying to listen to the doctor.

Our lives would never be the same…………just like when Gaby was diagnosed with breast cancer.

And just like with the cancer, our world had ended.

But of course, it didn’t.

And as I sit here in our apartment in Lima, Peru, having moved here three months ago, I begin to write about our life – our world – and how it changed that July day. And how it continues, one step at a time, one achievement and one failure at a time……..as we seek a better life for our children, and for us, in a way different than we had anticipated when we started our family.

I join the millions of other blogs flying through Al Gore’s stratosphere hoping our children will one day read this blog and be proud of their parents and understand that we love them with every fiber of our being. That we tried – and continue to try – to make the right decisions.

Although this maiden blog may seem somber (because it is), I have ALL our emotions to share. And, assuming I can acquire some sort of writing talent soon, you’ll be able to see that we as a family experience joy, heartbreak, love, hate, anger (a lot of it), jealousy, fear……and hope; just like we did before Adriana’s SMA and Gaby’s cancer diagnoses.

I don’t know how often I’ll write; my goal is once a week. But between work, helping Gaby with the kids (the hard work) and looking for a new job once my current employment ends, I don’t know if I’ll meet that goal.

I’ll do my best.

As I’ve learned, life continues after the world ends.

Talk to you soon!