Tag Archives: Children’s Hospital of Philadelphia

Return from Honduras

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Thank you all for your prayers! We just returned from our visit to Honduras….and wow, it was amazing!

Please see some of the pictures we took:

Our Godson, Juan Pablo, and his family, on the day of his baptism

Mario, Dina and little Juan Pablo, on the day of his baptism

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Juan Pablo on his way to the baptismal font!

Mom, dad and Godparents praying over Juan Pablo

Bella, enjoying her bath!

Bella’s cilantro-tiara

Bella and her Godmother with her new friend, Emily

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Cristina and Emily, a young girl with Spina Bifida in Honduras

Cristina sharing with the mom’s group in Honduras

Dina with Juan Pablo, our Godson

 

Bella, exploring Casa Guadalupe

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For 4 days during our visit, I helped out on a mountain mission to a village that had yet to host missionaries. It was so high in the mountains and so cold, that the villagers wore up to 2 coats at a time!

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Our mission team

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Teammate Katie, contemplating God’s creation

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Teammate Katie with one of the joyful families from the village

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It seemed like every house was 30-45 minutes away from the next….

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Another view from the top

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A long-term Missioner, Vilma, sharing her testimony

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Katie and Ashley teaching Gladys (one of the villagers) how to pray the Divine Mercy Chaplet

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The kids were so excited to come to our kids’ program each day!

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…but when they would arrive, they would try to act cool, like it was no big deal.

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Justin, a long term Missioner, would lead us in music

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The kids loved singing

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…and praying

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…and climbing trees

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Some of our friends on the mission

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The woman on the left had been through much suffering….but had an immense joy in her heart

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Tanya, one of the little girls from the village, making a commitment to follow Christ

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All of the kids from our program

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Katy, one of the little girls from the village, with teammate Ashley

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a big smile

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making funny faces

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the boys trying to act cool

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We took out a bottle of bubbles….which one of the older kids told me they had never seen before

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the kids chasing after the bubbles

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on our last night there, we had a MASSIVE (dangerously?) bonfire with the entire village

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Ashley loved brushing her teeth without running water

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On one of our last days in Honduras, we brought Bella to the Missionaries of Charity house….where the take care of the sick and dying, as well as orphans and children born with aids

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She loved the kids

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I think Bella thought that this sister was Mother Teresa….

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her only frame of reference is the image of Mother Teresa in our house

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Bella loved the food in Honduras

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Me with our Godson, Juan Pablo

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We let Bella take a SHORT spin on the back of the truck….

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She loved hanging out with the Friars

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Don’t know why she’s got her hand like that….

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Brother Gabriel scared her…..maybe it was his height…(he’s very TALL)

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The Poor Clares got special permission during lent to come out and see Bella in person….as they had been praying for her while she was still in the womb

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They might be cloistered….but they are SO JOYFUL!

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Bella with her Tia Diana and Tio Roger

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Bella hanging out with our compadres’ family

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Our compadre, Mario (Juan Pablo’s father) getting us some fresh coconuts from their front yard

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Our compadres’ grandmother (who is going to be 90 this year!) enjoying some coconut water

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Bella with her prima, Ana Cecilia

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Bella wanted a kiss….

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Looking ahead in awe

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Our Christmas picture:

Christmas 2014

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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!

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Bella chair 4

All Saints

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I’ve decided that since a whole year has passed….it’s time to get things back together for this blog!

What a year….since last October…..what a year! For those of you who have been following – it’s been quite the eventful 12 months! Last we checked in, we were making the move from New York City (then NJ/PA for a few months) down to Virginia Beach, Virginia. Due to financial difficulties after the In-Utero surgery that Cristina and Maria Isabella underwent for Spina Bifida repair, followed by Maria Isabella’s “2nd birth” via C-Section……we decided it was best to spend a year living with my parents, in a small room over-the-garage. Heck of a way to spend the 1st year of marriage! Don’t get me wrong….we were/are grateful for the opportunity….but it’s worth adding that God truly has a sense of humor. Sometimes Cristina and I jokingly regret doing this during our wedding mass!

Still, there is so much to tell since we’ve been in Virginia Beach…..from multiple ER visits, brace fittings, Spina-Bifida clinics, a birthday party (interrupted by an ER visit in the middle of the cake-cutting!) to wheel-chair fittings and even us purchasing a house!

Throughout all of it, however, God’s presence and Grace have guided us. That, is for sure. Even in our darkest moments, when we’ve been unable to see the light at the end of the tunnel…..He has been there….and He has sent us the right people and opened all of the doors for us to go through. (and closed the doors that would have sent us on the wrong path)

Please see our pictures below!

We continue to beg for your prayers and now that things seemed to have settled down (and us settled in to our new home!) to update our blog more often!

May God bless you and may Our Lady continue to intercede for you!

In Christ,

Andrew, Cristina and Maria Isabella Pocta

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With our realtor, Bob Smith, closing on our new home!

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A 1 year reunion of our Ronald McDonald House roommates – all mothers and children who underwent In-Utero surgery for Spina Bifida Repair at CHOP!

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Our little munchkin…..mooching off of mommy’s dinner! Who said babies don’t know how to manipulate?!

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Trying on Aunt Carol’s glasses!

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Did we mention that Mother Teresa is CONSTANTLY following us around?!

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Mother’s group celebrating All Saint’s Day!

His Hand in All of This…

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For the past few several weeks, Cristina and I have been constantly reminded that “He is in control” and that “…there is really nothing we can do, other than wait”. Both of these realizations, while good for our Faith and strengthening for our marriage, are nonetheless sobering.

Every once-in-a-while, during the most difficult moments of this whole recuparation process, the fears/anxieties/sadness of the unknown hit us like a ton of bricks and we have what we call our weekly “emotional breakdown”….which usually last only an hour or two.

“What if something happens and they have to deliver Maria Isabella too early? How are we going to afford all of these medical bills, when all is said and done? What if this whole surgery doesn’t do everything that we hoped it would? Will Bella be able to walk as she grows up? Will we be good parents to a child with special needs?”

or

“This time of pregnancy is supposed to be a fun time of joy, and we should be with family and friends showing off the cute ‘baby bump’, instead of being locked up in this house all day! Why is this happening to us? What is God trying to teach us in all of this?”

…and the list goes on.

I know this may sound ‘rough’ or a little ‘blunt’ but I have to share a recent reflection that God has been confirming through the testimony of other parents here in the Ronald McDonald House.

With this type of situation, (awaiting a “special needs” or “out-of-the-ordinary” child) there comes the natural and well-intentioned response of friends and family: “I’m sooo sorry that you have to go through this” or “We have to be careful because we don’t want this to happen to any of your next children” and even the thought or insinuation of “Bella is going to come out PERFECT/FINE, just you wait!” or “God has given me a vision of Maria Isabella and she’s gonna come out 100% normal, just have faith!”

Don’t get me wrong, we are very hopeful! (and we try to be as faithful as humans can be, daily!) But, you have to understand something – Maria Isabella is who she is. She is a little mix of Pocta and Rivera, she seems to have a slightly dark skin tone (the Doctors told us when they operated on her back) and she has Spina Bifida. She always will. This is part of who she is. 

If she were any other way, she would not be our daughter. 

God has sent us to her….He has sent us here to Philly/NJ for a reason, for a Divine Purpose….and on the days that Cristina and I aren’t too consumed in focusing on our own problems, (instead of being present to those around us) we can see it in every interaction we encounter.

So….(and trust me, I say this with ALL of the LOVE in the world!) if you pray for us…or pray that Bella’s Spina Bifida wasn’t there anymore, instead pray not only that Cristina and I will be the best parents that we can possibly be to her, but that she will be free to grown in to the person that God has created her to be, free to love others and to teach others, all according to His Divine Plan.

His Hand is most definitely in ALL of this…..because trust me, if it wasn’t, Cristina and I would have quit a LONG time ago.

7 Week Update

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Today marks 7 weeks since Cristina and Maria Isabella’s fetal repair for the small defect (Spina Bifida) that was discovered 2 1/2 months ago.

Aside from a little scare from the ultrasound, everything is looking very good! Not only has Maria Isabella continued growing as expected, (and as hoped!) but she continues to move her legs and feet. Today we caught a quick glimpse of her toes twinkling…..and that is a VERY good thing!

Towards the end of the check-up, our nurse and ultrasound technician noticed something with Cristina’s cervix and both became very quiet for a moment. But they aren’t like that…..both are actually very joyful and ‘jolly’ about everything, each time that we visit for our check-up…so Cristina and I knew that something was up.

“Now…we don’t want you to start freaking out, cuz that won’t be good for the situation, Cristina, but we found a little dilation of the Cervix that is cause for a little concern….so we’re gonna go talk to the team and look a little further.”

The funny thing is that we didn’t start to worry….which is also out of the ordinary because we’ve become somewhat accustomed to worrying during our ultrasounds. (since the fateful day that they found the defect)

I looked at Cristina and we both, almost at the same moment, said to each other “I’m not worried. For some reason, I have that sense that He’s in control and there’s NOTHIN we can do about whatever is happening.”

So I step outside to ask the nurse a question and as they notice me coming out of the little sonogram room they all quiet down and look towards me, and quickly (and what seemed to be nervously) ask: “Is everything ok? We’ll be right in!”

Well….I didn’t want to freak Cristina out…so I walked back in and looked at her to say “Don’t worry babe….I’m sure it’s all gonna be fine and this is somewhat normal”…….as the ultrasound technician comes back in to do an alternative machine to examine the actual cervix.

What had happened was that the cervix site appeared to be extremely dilated (like in a woman that was 9 months pregnant, due ANY minute!) and they thought that Cristina was going to have to be hospitalized and it seemed like Maria Isabella was going to have to be delivered like….today!

FALSE ALARM, Praise God! Cristina had held her bladder for more than 2 hours in order to give them a good urine sample….and the bladder put so much pressure near the cervix site that the image they captured in the sonogram was actually a mere “focal” contraction in that area due to the pressure from the bladder. No need to worry, everything was OK!

After our appointment, we got the chance to visit with our friend, Avery, and her parents who are in CHOP all day while they wait for her to receive her monthly “heavy-dose” of Chemo/Radiation treatment to fight the cancer in her stomach. She’s quite a special girl, and has definitely been one of the people here at the Ronald McDonald House that makes our days go by a little bit faster. Please pray for her….she’s only 5 years old and has not only spent the past 7 months battling cancer, she has been in this Ronald McDonald House (away from her siblings/dad and the “normal” life of a 5 year-old) for the past 5 months….and she still has 4 to go. She’s a tough girl…but she’s got a ways to go, so please pray for her and her parents!

Here’s a little contest video we put together this past weekend for our Ronald McDonald House here in Camden New Jersey – as part of a Toyota Cars 4 Good contest. Our hope is to win a new Toyota for the Ronald McDonald House by getting the most “likes” on Facebook on June 21st. Check it out! I will remind you all when the date approaches!

Thank you for you prayers and support! Even though things look good….and God continues to bless us…..we still have a ways to go – 9 more weeks! In 2 weeks we will be approaching our half-way point…..so please continue to pray hard for Cristina and Maria Isabella! Your prayers and support mean so much to us, we always look forward to checking the mail downstairs and finding letters that you’ve sent to help keep Cristina from going crazy!

God bless you!

Andrew

6 Week Update (and ultrasound videos)!!!

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It’s hard to believe that it’s already been 6 weeks since Cristina and Maria Isabella’s Spina Bifida/Myelomeningocele fetal repair back on March 14th. For those of you who need the background info, here’s the post about the Surgery at CHOP (with Videos, separated by chapters) and also the posts from the day of surgery.

6 long weeks….and 10 more to go until Maria Isabella is delivered by C-section. (which is and will be necessary for all of our future deliveries because of the traumatic incision to the Uterus during fetal surgery)

Today was a very good day! Maria Isabella seems to be coming along great her hindbrain herniation has begun reversing – allowing a natural flow of fluids to/from her brain. Her head shape and the size of her ventricles (because of an increase of fluid build-up associated with Spina Bifida and Hydrocephalus) all remain “normal” and show no signs of concern…which is a HUGE relief. Our prayer is that this continue to stay the same and that the more time that Bella is in her mother’s womb, the more time she will have to heal.

Here are a couple of video clips I got of her Ultrasound today:

Here you can see Maria Isabella with her hands on her cheeks

In the first few seconds, you can see her move her hand across her face

In this video, notice Maria Isabella and her hiccups

Isn’t she gorgeous!? As you can see, she is coming along well! Please pray that this continues!

Let me thank you all for your continued prayer and help…we continue to receive letters/cards/packages in the mail and trust me, this has helped Cristina and I get through this whole thing….we feel your support and Christ’s presence through each and every one of you!

More updates to come!

In Christ,

Andrew, Cristina and Maria Isabella Pocta

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.

Easter / Week 4 Doctor’s Appointment

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First and foremost, we hope you have had a blessed and holy time of Easter – in celebrating Our Lord’s Passion and Resurrection all for US!

As for Cristina and I, we were able to enter in to the Great Mystery of our Faith in a special way this year. On Good Friday, we decided to sit and pray/meditate as we watched The Passion on our laptop and during the 2 hours of the film, Cristina went through some of the worst post-surgery pains that she has experienced since the actual operation…..so she was really able to enter-in.

Our bedroom at the Ronald McDonald House….

Unfortunately, one of the realities for Cristina since the surgery is that all of Maria Isabella’s movements cause her an intense stinging/stabbing pain near her incision. (and the ab muscles that were cut through in order to access the uterus) So, while we LOVE to feel little Bella move….and trust me, the other night Cristina said she felt her jumping (you could even see her stomach moving a little from where I was on the bed!)……it’s also a painful experience. It’s not as funny as it sounds, but we both sometimes pray – nervously – to God that she continue moving, because each day that she moves is a GOOD sign, but we know that it means pain for Cristina. It’s tough as a husband because I’m unable to really do anything to alleviate her pains…..and the more that I talk, the more that Bella moves!

On Saturday – the Vigil of His Resurrection – I spent the morning learning how to make Puerto Rican roast pork or “Pernil” (pronounced like Pair-Kneel for all of our non-spanish-speaking family) and Puerto Rican mashed & seasoned Plaintains or “Mofongo” (pronounced like Mo-Phone-Go) with a Puerto Rican family staying at the Ronald McDonald House. It came out pretty good and looks like this:

Not as good as my Father-in-Law’s, but still good. 

For our “Easter-Vigil”, we had a visit from Msgr Michael Mannion (our new friend) who brought us – and 2 other Catholic families – Communion and prayer because none of us are able to leave the Ronald McDonald House to visit any of the nearby Churches. One of the families comes all-the-way from Chicago and are going through some of the initial phases of evaluation for treatment for their newly adopted son, Henry, who comes from the Ukraine.

Henry was born with an extremely rare disorder called Larsen’s Syndrome. His parents, Paul and Carla, have 6 biological children and have answered God’s call for them to adopt another – a special needs boy who was abandoned by his mother in the Ukraine. They were told about his disorder and special needs when they first enquired about adoption and specifically Henry, but when they had his first medical exams here in the US, they found that his physical condition was MUCH MUCH different than they had ever imagined or had been told. Please pray for Henry and for Carla as they pursue some of the options for his treatment at CHOP, they are an incredible family and it is obvious that if Love is the cure for any disease/disorder/wound, Henry is in very good hands! Check out their blog at : Bringing Henry Home. 

That same night of the Easter Vigil, some of the other guys here who are staying at the Ronald McDonald House with their wives and I decided to grill-out on the back porch, as a sort of Easter celebration and a way to get out of the daily routine of things, especially being stuck in the house. It turned out to be a pretty nice night of grilling, sharing stories and enjoying the company of other families who are all going through difficult times themselves. In some profound way, we can see how God has brought us all together at this very time, from all around the world, to share in these scary but hopeful moments of our lives.

Well….back to our countdown. After counting down the 6-7 days between each wednesday, we arrived at our 4th appointment since being discharged from the hospital. It’s kind of weird but since finding out everything in the ultrasound about Bella’s back, back on Feb 13th, every ultrasound seems to cause us a certain amount of nerve/anxiety. I also feel like a pro when it comes to what the technicians and doctors look for once they get Maria Isabella in their sights on the ultrasound screen…..”Doctor, how are the fluid levels in her brain? How are the membranes on the Uterus looking today?….”. My wife usually has to pinch me to shut-up before I practically run through the actual check-up without giving them time to get all of their data!

Praise God, today everything (fluid levels, toes/feet/leg movement) seems to be going exactly the same…which is a VERY good thing! Maria Isabella seems to be jumping around late at night while we watch a movie or play games on the bed, but by the time she’s looked at in the Ultrasound, she’s back to a breach position. She’s definitely as stubborn as her mother…..and the Doctor tried to get a good picture of her today but right when she had moved enough for the good quick shot of her face you see in the picture above, she started moving again and facing downwards in the breach position. The doctor was laughing and getting a little frustrated, “Oh, well if that’s how it’s gonna be Maria, then forget it!” she told her.

After finishing up, we were able to head down to the NICU to visit our friend’s daughter…..the woman that we mentioned in a previous post that had global Membrane Separation (one of the risks associated with the surgery) and had to have a C-Section only 2 weeks after her Fetal Surgery. Her daughter, now 28-29 weeks old, (or 1 month out of the womb) is also doing really well! She’s tiny….a little over 12 inches long…..but her development is going really well! Please continue to keep them in your prayers…it’s a long road ahead and she has had to sacrifice being away from family while she lives here at the Ronald McDonald House and in the NICU at CHOP. The NICU at CHOP is world-renowned and is one of the most beautiful yet warm/comfortable ICU units that I’ve ever seen, even in pictures. Here’s a little breakdown of how it’s set up:

 That’s all of the news we have for this week. We thank everyone who sent cards and messages to Cristina on her birthday Friday…and thank you to all of those who have been praying and supporting us…..you continue to be so generous and have taken a HUGE load of worry off of our shoulders as we slowly and nervously count down each week as it passes!

Please continue praying….I will try to update this twice a week….and I’d love to share more of the stories of the families and children who are staying here at the Ronald McDonald House….their stories and their joy is amazing….we are truly in the midst of living Miracles!

Thank you and may Our Risen Lord Bless you!

Andrew (and Cristina and Maria Isabella)

Week 3 doctor’s appointment

Standard

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