Tag Archives: Birth defect

The Latest Happenings….

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Wow! It’s been another long period since we updated this blog……and a lot sure has happened!

It was actually in returning home from New York City this past weekend that I felt inspired to update our blog and create this post. (and hopefully, be more consistent in it!) I’ll go in to more detail about NYC later in this post.

So, since our last update in April (right after our return from Honduras), it was as if Christ was calling us to truly learn to live our normal, routine family life. Yep, I’m talking about all of the small things: working a 9-5 job while Cristina stayed at home with Bella, then coming home to have dinner and spending the last couple of hours with Bella playing, coloring, bubble-bathing and saying our nigh-night prayers before bed. As Cristina puts it, Christ was “romancing us” in the beauty of simply-living and breathing.

Daddy and Bella reading

A lot less dramatic/exciting than one imagined their life would be after having spent years as a missionary in Honduras! But, alas, this is EXACTLY where Christ has us.

God speaks to us in the ordinary

God speaks to us in the ordinary.                         (Bella saying Grace before dinner)

You see, there is a really profound piece of advice I’ve gotten from a Catholic blogger I’ve been following for the past few months (charliej373.wordpress.com) . A former political consultant, Charlie has dedicated himself to giving a sort of spiritual direction to his readers as the events of the world unfold around us, (ISIS, Ebola, our Govt, etc etc etc) yet he reminds his readers that our call isn’t to await some huge world-changing CATASTROPHE or for the END OF THE WORLD, nor does he spend time focused on the panic or the fear that the world news could cause us. His daily reminder is that:

“The only thing that will put flesh on the bones of our plans is to relentlessly acknowledge God, take the next right step, and be a sign of hope to those around us.”

I digress.

As I was sharing, these past few months have served as a reflection on the importance of our home. Not only for Bella and her future siblings (God-willing), but for both Cristina and I as well. Cristina and I, since our youth and young-adulthood, recognize that God has molded our hearts and our calling to be outward-focused…..but over the years and through the process of spiritually maturing, (which seems to be slower than we’d like!) we see the importance of starting at home and creating a refuge there.

bella birthday 2

This time has been full of laughter and of tears…..of days that fly by and days that seem like they will never end. In the midst of all of them is our life, for better or for worse. We’ve had 2nd birthday parties:

 bella birthday

…gone to Princess Parties:

bella princess

…enjoyed the beach:

“I got and in my baysoo”

bella beach bandw1 bella and daniel1 bella and grace1 bella and daddy 1

….visited old stomping-grounds:

Family selfie in Philadelphia

…..had a day at the zoo:

bella zoo 1 bella waterfall zoo bella giraffe 1

…saw old friends (and future mother superior…?)

why so serious?

….got first Dominican-salon haircuts:

bella haircut

Don’t let the skin color fool you, this girl is half Carribean!

…hung out with cousins:

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…but most of the time, goofed-off:

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More than anything else, we’ve had days full of love. Mostly the fun, sloppy-wet-kiss-on-the-lips kind of love, but even the tough kind as well. It’s all good…..it’s all real….and in it is where we find God.

That brings us back to this past weekend in NYC….3 years after we lay prostrate before Our Lord in our wedding…..who would’ve known?

Congreso Foto

This past weekend, Cristina and I were invited to speak at the 7th Annual Pro-Life Congress for the Spanish Office of the Archdiocese of NY. This time, we were actually invited to lead workshops, separately, regarding Masculine/Feminine Sexuality and it’s role in rebuilding a pro-life culture. It’s incredible to look back at our lives and think about the gift that is our sexuality. How many problems in our world could be traced back to that: the misuse of the sexual gift? I’d argue the vast majority. On the flip-side, how many victories have been won for God’s Glory because of a healthy and whole understanding of our sexuality? I’d say many more.

Our Corazon Puro friends at the Congress

It was a blessed time, and since the folks that put on the event are old colleagues (at the Archdiocese) and good friends (Catholic Marriage Movement from the Bronx) of ours, it was like being with family.

As you can imagine, Bella stole the show. I’m pretty sure that more people showed up for her than to participate in our workshops!

That’s all for now…..pray that I can update this more frequently – that really is my goal!

Please pray for this little family,

In Christ and Our Lady,

Andrew, Cristina and Maria Isabella Pocta

…reflections on a video project i’ve been working on

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Ever since Cristina, Bella and I returned from Honduras earlier this month, I’ve been working away on a video that attempts to reflect on the heart of what Missioners of Christ really do in Honduras. But, as I started creating it and reflecting on the life and teachings of Saint John Paul II, Blessed Mother Teresa of Calcutta, Pope Benedict XVI and now Pope Francis, I realized that the more specific I got with things, the less I could explain it with words. It all comes down to love. Everything always has and always will. Thank you, Pope Francis for making me uncomfortably remember this.

What I mean by that is that we, as a society (all of us – subconsciously or not), have a hard time grasping things that aren’t results-based or empirically measured. It’s flat out how we’ve been bred in the 1st world….and through globalization, it’s spread everywhere. We simply struggle with the concept that Mother Teresa attempted to teach us, that “We are not called to be successful. We are called to be faithful.”

It’s tough. It’s not fun, exciting or compelling to truck along and remain faithful when all of the novelty has begun to disappear. In fact, in my reflecting, I’d venture to say that this is one of the great problems of the current and past few generations (all over the world) and it is seen in religion – we just don’t stick with things anymore. Even less do with stick with things when they aren’t fun/exciting/affirming/fulfilling anymore. This will be one of the greatest crosses that post-modern man will have to overcome to remain free, to remain alive.

Case in point – one of the most significant struggles for the average participant on one of our 1-2 week long missions in Honduras, is that we don’t build or repair structures (churches or schools) or focus on any relief work (food relief programs, shelters, orphanages, etc). I can’t even count how many conversations I’ve had with someone who struggled with the idea that we spend a week in a remote mountain village in Honduras, visiting house-to-house, praying and living with the people in the given town. “But what about some sort of project that we can leave behind? What will the people have to remember us and to remember this trip?” There is a difficulty in not seeing any results or seeing the fruit of our labor. We’ve been trained to think that unless we can bring back pictures and videos of our labor, our work is uneventful.

This is simply not true.

Don’t get me wrong, those things are all good, beautiful and necessary. Christ has called us to provide these things and to be generous with our talents and treasures…..to the point that it hurts us.

But as Missioners of Christ in Honduras, we have simply not been called to that sort of ministry as part of our permanent presence in Comayagua. Although it happens, from time to time, just by nature of being someone’s permanent neighbor. I can remember when a hurricane hit the country and flooded a number of homes in our neighborhood – we stopped working on retreat preparations and we had to literally carry people to safety. This is part of life, even here in the US. But our ministry was not focused on that.

As Missioners of Christ, we’ve been called to simply love. To love til it hurts. To love even unto death. This means truly living  amongst the people of Honduras. This means being a fellow parishioner at our local church…..it means being a neighbor when the roof collapses or when a family member dies. It means playing soccer with friends after a day of school or even attending their 16th birthday party. It means eating in another’s home, even if there house doesn’t meet our sanitation standards. It also means embracing one another when cultures collide, or when a young father of 4 loses his job. The list goes on….as it should, but our call has been clear (although the practicals are FAR from clear) : LOVE.

Please, check out the rough draft of the video:

Looking ahead in awe

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Our Christmas picture:

Christmas 2014

Christmas fun 1

There’s not much to say in this post. We have spending a lot of time in awe of our daughter and the Grace and Strength that Our Lord has given her…..especially in the last 2-3 weeks.

For a while we were worried that Maria Isabella was a little too attached or dependent on mommy and daddy, (we’re definitely happy about her having an attachment to us, her parents, but feared that her needing to be carried around would cause additional dependency) but have seen her break out of her shell in the past few weeks.

We sat talking on the couch one afternoon last week and it hit us. During a quiet moment in the conversation, we heard…..silence. Cristina anxiously looked around and our little ‘bug’ (as we affectionately refer to her – a term coined by her cousin Daniel, who couldn’t pronounce Isabella or Bella) was nowhere to be found! She had traveled off in her wheelchair, in to the bathroom to find her toothbrush!

This was the moment we had dreamed about (and I’ll admit, cried many nights about)……something we looked around and saw in our other friends with children her age…..exploring the world around them, playing with toys and examining the furniture/toys/decorations/etc. while their parents talked to other parents like us. For so many weeks/months, Bella was unable to do any of that……but now that is all slowly changing.

There is much work to do….and Maria Isabella’s toddler-potential has yet to be seen…..so we continue praying and working and pushing her!

bella chair 3

Bella chair 4

Show and tell

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This week, Bella’s physical therapist, Karen, (who has been a HUGE blessing to our family, and truly loves Bella) invited her and Cristina to the physical therapy class she teaches at Old Dominion University. (which also happens to be my parents Alma Mater)

As her class has been learning about different birth defects, Karen wanted to present Bella and explain the various therapies and exercises that are done in order to help Bella learn to crawl, “roll” and one day, walk.

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Bella and the Physical Therapy program at ODU

We don’t know where we would be or what we would do without Karen! What a blessing it is to have people who are so generous and who sincerely love Bella….we owe so much to all of her doctors and nurses (she’s pretty famous at our local Children’s Hospital of the King’s Daughters) What a gift it is to know that there are many who love and serve children with special needs…..God is too good to us!

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She’s smiling because of how much the Doctors and Nurses love her at CHKD…….and well, Elmo might be helping a little bit, too

Week 5 Update

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I apologize for not updating this earlier, but this is the first chance that I’ve had to sit down and write!

Praise God, yesterday’s check-up went very well…things seem to be coming along, slowly but surely. As always, the normal ultrasound exam was done to examine Maria Isabella’s spine, the surgery site on her little back and also the progress of her brain development and fluids.

Along with last week, we couldn’t ask for a better situation….Maria Isabella is progressing along in this pregnancy and her ventricles haven’t increased in size(due to the fluid levels) since the surgery. This is a VERY good thing! The Chiari Malformation (or  hindbrain herniation) which is one of the worst parts of having Spina Bifida, has actually reversed – allowing for a healthy flow of fluids to-and-from her head.

A is a baby with the herniation, B is without. (Maria Isabella’s brain is now looking more like B!)

This is what they look for when they measure her ventricles (gratefully, Bella’s are A LOT smaller now!)

Our prayer is that the ventricle fluid levels remain constant, or if they increase at all, (which is somewhat common with Spina Bifida, and not necessarily a reason for alarm) that they don’t increase to a dangerous level.

Let me tell you, our little daughter constantly confirms her stubbornness. Every night between 8-10pm, little Bella is movin’ away, kicking and doing flips….but once we get in to the hospital for her ultrasound, she goes right back in to a breached fetal position. Unfortunately, her movements still cause Cristina some pain (and will continue to, until she is born) but it’s all a good sign because it means that she is kicking and moving her feet and legs and there has been no sign of paralysis!

As for me, I am back in NY for the weekend to get a few things done here at the Office and at our apartment, (we are moving things out because we can’t afford rent at a place we aren’t even living in) but I will return to be with Cristina on Monday morning. Look at the gifts we received when I came in to the office today:

An Icon from Poland!

A statue of Our Lady – really pregnant!

Please continue to keep Cristina and Maria Isabella in your prayers…..thank you all who have been praying for us…who have mailed us or sent us things that have kept us busy during this time of waiting! Your support means so much to us…God bless you!

Also – everyone should see this little video that a mother made of her children….it’s pretty amazing…but with the rough statistic of 93% of babies diagnosed with Down Syndrome,  it’s a definite tearjerker!

World Down Syndrome Day

God bless you all!

In Christ,
Andrew, Cristina and Maria Isabella Pocta

What is this world coming to?!

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It’s pretty ironic that only a few days ago I posted an article about this….

Please please please read this article about a recent episode of DR PHIL (link to the episode on the Dr Phil website if you don’t believe me)

I know that once you start reading, it may be hard to continue…..but it’s important to know what kind of ideologies/beliefs/morality is being taught to us through the media…..notice towards the end of the episode how the majority of the audience seems to agree with the woman’s idea…..all because they’ve become “emotionally” involved. Disgusting.

A future world like this scares me.

http://liveactionnews.org/human-rights/dr-phil-show-advocates-for-mercy-killing-of-people-with-disabilities/

The article by Cassy Fiano at LiveActionNews:

This week on the popular Dr. Phil Show, a mother named Annette Corriveau was featured. She’s special because she wants the right to be able to kill her children.

That’s right. She is the mother of two severely disabled adult children, and she feels that the moral thing to do would be to kill them by lethal injection, to end their “suffering.” Her children were diagnosed with Sanfilippo syndrome, causing them to lose motor function and be institutionalized. They cannot speak, and they have to be fed through feeding tubes. Any more information on their condition wasn’t made clear – probably because, as Annette admitted, she visits her children only once every two months. The people who actually work with her children every day, and see them on a regular basis, and could therefore give a better idea of what their lives are like, were not interviewed for the show. We had only Annette’s point of view, which is that – according to her – if her children could choose, they would choose suicide.

She admits that she doesn’t know if they are in pain. She doesn’t know if they’re deaf or blind. She doesn’t know if they recognize her or not, and she doesn’t know what actions and activities, if any, are comforting to them. She doesn’t know if they are able to communicate in any way. She says that they’ve never left the facility they’re in over the past twenty years, but she also doesn’t disclose if she’s done anything to try to take her children out on trips – although considering that she visits them only once every two months, my guess would be no.

Yet she feels that, because she is their mother, she should be allowed to end their lives – because she doesn’t think their quality of life is worth living for.

Also invited on the show? Attorney Geoffrey Fleiger, who defended the infamous Dr. Jack Kevorkian. As we all know, Dr. Kevorkian performed assisted suicides for his patients, and the argument being made is that this is the same thing: helping people put themselves out of their own misery.

Assisted suicide arguments aside, there is a glaring difference between what Dr. Kevorkian was doing and what Annette Corriveau is advocating: these children wouldn’t be committing suicide. They wouldn’t be calling Dr. Kevorkian themselves. They aren’t consciously making that decision. It is a choice being made for them, by the person who is supposed to love and protect them. No matter how sympathetic you try to make yourself seem, this is murder, plain and simple. Taking someone’s life and calling it “merciful” does not change the fact that you are taking someone’s life.

The most disturbing part of all? Dr. Phil offered a weak rebuttal to her argument, but he still went on calling this an act of mercy to her children. He then polled the audience to see how many of them agreed with this mother.

Almost every single member of the audience did.

The woman crying at the end of that video was the one person speaking out for those children. She was given all of a minute, tops, to make her case for why murdering people with severe disabilities is abhorrent and wrong. And in that minute, she was able to pretty much hit the nail on the head: that you can’t kill your children just because it’s too much work for you to keep them alive.

This isn’t the first time Annette Corriveau has spoken publicly about this issue. She was featured in a documentary, Taking Mercy, along with a father who actually did kill his disabled daughter in the name of “mercy.” (You can watch the video here – it’s about fifteen minutes long.)

Robert Latimer, the other parent in Taking Mercy, murdered his daughter to end her “suffering” by putting her in the cab of his truck and letting her die of carbon monoxide poisoning. The affliction that meant that her life was not worth living? Cerebral palsy.

These two parents want to make it legal to murder your children if, as a parent, you feel that their lives aren’t worth living, because they are supposedly suffering too much. And what makes a life not worth living? Apparently, having a disability.

While you can’t argue that Annette Corriveau’s children are severely disabled, Robert Latimer’s daughter was nowhere near them in terms of disability. You can see her in videos, laughing and smiling. The reason he decided to kill her? She had to have surgery to repair her hip, another surgery in a long line of them, and he felt that her life was too “painful” to live. He says that after she died, he knew she was at peace. And of course, so was he.

What makes these people think they have the right to decide whether their child gets to live or die? Annette Corriveau repeatedly says that you can’t judge her unless you’ve “walked in her moccasins,” but that is a load of nonsense. This has nothing to do with being judgmental, and everything to do with refusing to open the door to euthanasia.

It’s repeatedly said that this should be between the parent and the physician, and no one else, but it isn’t the parent’s choice to make. You don’t get to decide whether someone’s life is worth living or not. You don’t get to decide that it’s better to murder people than let to let them live.

Perhaps the most frightening aspect of this entire argument – that “mercy killing” should be legalized – is the potential for a deadly slippery slope. If they get their way, then who gets to decide what the marker for quality of life is? Who chooses when life is worth living for someone else? What disabilities deserve a death sentence? Sure, Annette Corriveau’s children are severely disabled. But what about parents who feel that their child with, say, Down syndrome has poor quality of life and doesn’t deserve to live? Multiple sclerosis? Muscular dystrophy? Cerebral palsy?

There are hundreds of thousands of people in the world living with disabilities, and I’m sure they wouldn’t want someone deciding for them that their lives aren’t worth living and that as such, they’ll be murdered. The fact that this issue has been brought to prominence on The Dr. Phil Show and portrayed as a legitimate issue of compassion and mercy is horrifying; even worse is that so many of his viewers apparently feel that killing someone because of a disability is A-OK.

The reality here is that no one gets to play God and decide who lives and who dies, or whose life is worthwhile and whose isn’t. Just because you brought your children into the world doesn’t mean that you have the right to take them out of the world, whether it’s done in the name of mercy or not. Because no matter how you may try to paint the picture, there is absolutely nothing merciful or compassionate about murder.

Week 3 doctor’s appointment

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At this point Cristina and I have our countdowns until Wednesday’s weekly appointment, so today was very exciting for us as you can imagine.

After putting a couple hours of work in this morning and after getting Cristina ready to leave her bed (after 7 days of being stuck there!), we headed to CHOP. On the way we found this voicemail from this morning! :

Message from the big guy

It’s been such a blessing to have such support and prayers coming our way!

The appointment was as normal and routine as the last 3, basically consisting of a 30 minute ultrasound with questions from the Nurse Practitioner and our Doctors. Also, Maria Isabella’s anatomy is reviewed and checked to monitor the progress….

The liquid on her brain ,specifically within the ventricles, has remained stable. Remember, one of the major effects of the Spina Bifida defect (hole in her back, exposing the spinal cord and nerves)  is the amniotic fluid among other fluids, slowly accumulating on top of the brain which causes Hydrocephalus – or “water on the brain – in latin. They let us know from the very beginning when we were discharged post-surgery that it was very normal (although NOT necessarily always the case) that the fluid levels might slowly rise before they were to fall (God-willing). The normal size of a baby’s ventricles without Hydrocephalus is about 10mm on each side.   Today the ultrasouns shows that the  levels remained the same – about 13 mm and 14mm – on the two ventricles! While they are ‘slightly’ larger than the average baby, they still remain at a good size! Let us keep praying that they stay that way!

Also, last week in the ultrasound we had noticed that Maria Isabella had her legs crossed – indian style – and that meant that she was indeed moving them. Today we noticed her legs were uncrossed but she had her feet overlapping one another….and the best part – we actually noticed a slight twinkling of her toes….which means that if she’s able to move her toes, shes able to move her feet….and her legs. That’s a great sign! Please pray that this also remains the same and that the surgical closing of the defect is able to prevent any further damage to her nerves and thus immobility.

Here you can see her feet, and the larger oval shapes are her knees!

Overall, we couldn’t be happier with how she looks in the ultrasounds….she continues to move and to wiggle around while they try to examine her….and that is all a good sign!

Please continue praying for her protection within the womb…and for Cristina’s continued recovery.

I promise to keep updating whenever we have news!

In Christ,

Andrew