Blessed Margaret of Castello

Since hearing about our story, a good friend from St. Michael helped bring a relic of a potential saint to visit in our house - a relic of Blessed Margaret of Castello.

For the benefit of those who aren't as familiar with saints, they are deceased people for whom the church has enough evidence to determine they are in heaven. Under the modern process, the normal path has four stages. After a potential saint dies, the local parish and diocese begin an investigation to confirm that the person was dedicated to doing God's will. If they decide to forward the cause, the person is declared a "Servant of God" and makes a recommendation to the Pope, who starts step two. If the Pope determines that the person lived a life of heroic virtue, then the person is declared "Venerable." While there's several different ways of completing the third stage, it's completed when Pope declares the person "Blessed" - it is worthy of belief that the person is in heaven. However, the final stage to be called a saint is confirmation of miracles occurring after their death which are attributable to the Blessed's intercession.

Blessed Margaret of Castello was born more than 700 years ago near Florence, Italy (incidentally, where we started our honeymoon). She was the first born of some wealthy nobles, who were disappointed in her gender, as well as her physical deformities (she was blind, hunchbacked, and her right leg was much shorter than her left). Her parents were so ashamed of her, they told people she had died at birth, and when she was almost discovered at the age of 6, they locked her in castle prisons for a decade. Around her 17th birthday, her parents took her to a shrine in Castello, and prayed she would be healed. However, her parents did not wait long, and instead abandoned her there. The townspeople helped her how they could - the homeless taught her to beg and find doorways/empty buildings to sleep in, and the poor gave her housing as they could. Regardless, she found time to pray, visit those in prison, help sick people, and comfort the suffering. When she died in her early 30s, the entire town attended the funeral and demanded she be given a grave inside the church - a place of highest honor. A crippled girl was miraculously healed at Margaret's funeral, and so the priest agreed.

The Dominican order was active in the town of Castello during Blessed Margaret's time, and have
kept her close to their hearts. Through the Dominicans at St. Patrick's church in Columbus, her memory has found her way to the Columbus area, and through some other priests, into our home. And wouldn't you know that she only needs one more confirmed miracle to be declared as an official saint in the Church!

We've added Blessed Margaret to the audience of our prayers. We know she doesn't grant miracles, but she has a special place and ability to ask God on our behalf. While we can (and do) pray to God directly, it doesn't hurt to ask someone else like a friend to also pray for us and she has certainly become a friend to us!

We know that with a diagnosis like this, God seems to need Caroline Mary in heaven shortly after her birth. However, where there is life, there is hope.  For us, we pray that God's will is to instead heal her and keep her on earth for years to come.  How amazing would it be if  Caroline could be one of the miracles on Blessed Margaret's to sainthood! But even if isn't we are sure she will kindly intercede for us from heaven in other ways.  Blessed Margaret of Castello- pray for us!

26 Week ultrasound and more genetic results

On Monday, March 4th, we met again with our counselor, to continue discussions on telling our kids. It's hard to see the kids grow to learn about realities of life, but we are lucky to have the opportunity to do so at their pace. She also reminded us that although each of us is processing this differently, we each have unique contributions that help our family accomplish this journey.

Tuesday the 5th we again returned to St. Ann's MFM department for another ultrasound.  We consider these as our special times with our daughter, because we can see and hear her in real time. We can see Caroline move on the ultrasound at the same time Jessica feels her move, and we can hear the rhythm of her heartbeat. We even got a picture of Caroline imitating her mommy -resting her open hand on her belly!

We had a few moments to talk with  Katie the Genetic Counselor. She already had our own test results back, and confirmed that both of us are carriers for the recessive Meckel Gruber gene.  She answered a few more questions, telling us that the MG gene is not on an X or Y chromosome or age related, and that the labs confirmed two separate markers in Caroline's sample, they can identify which one came from Jessica and which one one came from Tom.

Dr. O'Shaughnessey confirmed that there's virtually no amniotic fluid left, but he did see a small bladder that had a little fluid.  We had a chance to discuss some more practical issues, like what size to plan for Caroline's burial clothes. Dr. O'Shaughnessey also offered some important comments on an autopsy. Although we already know Caroline's diagnosis we are considering an autopsy because of the potential inconclusive nature of genetic testing for some families. Dr. O'Shaughnessey commented that some families only get that from the autopsy, and that the Doctor who performs ours and notes the records here in Columbus will now have those results to compare/share locally for others. Years later, that doctor can confirm someone else's diagnosis based on the experience and knowledge of seeing Caroline. And while it's always a devastating diagnosis, we can at least empathize with the comfort that comes from some additional knowledge and understanding.

Conferences/Funeral Home and Cemetery meetings

In the days after the MRI, we took the next step with the kids - we've told them that when Caroline's parts are not growing or coming together correctly and because of this there can be some very serious problems. After they had a chance to process that information we told them that she will be very sick when she is born. They've asked some important questions as they start to understand. Following several suggestions we received from the therapist and the prenatal hospice team, we took extra care to remind them that Caroline is still very much a part of our family. Andrew blurts out her name - something that sounds more like "Cyeah-oh-wine" but is endearing all the same.  Jane and Edward include her in their regular conversations.

On back to back weekends in February, each of us had a chance to attend the Catholic Women's and Men's conference and hear some important messages about our faith. It was also an opportunity to be out among friends, but still tough to talk about our situation in person. A special moment included Jessica and Caroline being prayed over at the end of the women's conference by some amazing friends.  Most of all, it was truly humbling to hear how far and wide the prayer network has spread, and even see some of those people who are praying for us. It's hard to believe how Caroline's life and story has brought so many people together, and can cause people to do so much good for others.

Jessica's Ladies Ancient Order of Hibernians (the Irish Catholic Ladies' group) surprised Jessica with a spiritual bouquet filled with prayers of members from the division. The handmade flowers each had a message and prayer attached, and make a beautiful display in our home's entry way.

The transition from February to March happened between two of the hardest meetings in this whole process. Thursday the 28th, we had our first meeting with Schoedinger Funeral Home to plan for caring for Caroline's remains. We had a tough time talking about specifics and arrangements. Schoedinger has worked closely with Back in His Arms, the group that provides resources to parents who are suffering infant loss, and therefore has some unique experience handling these situations.

Friday March 1, we met with Resurrection Cemetery, to discuss plots and graves.  They have a section for infant graves (the Guardian Angel section) and the image of all the kids playing together helped warm our hearts. We also visited some special graves and had a few moments of prayer with them. There is also a chapel on the grounds, where they hold mass each calendar quarter to remember miscarriages and infants that are buried at the cemetery.

Since it was the first Friday of the month we finished the evening with a family adoration at church and dinner out with Jessica's parents.

Family Pictures!

A few posts back, we mentioned getting family pictures with Capri, the professional photographer who's one of Jessica's friends from college. They came back, and they're amazing! Here's a few of our favorites....

Confirmation

Tuesday, February 19th, was an uplifting day. It started late morning with a phone call from staff at Mount Carmel's MFM department - the results of the amniotic tests were back. The lab confirmed that Caroline's genes had two genetic markers for Meckel-Gruber, and thus confirmed the diagnosis. Although a fatal diagnosis, it is one that we have now been expecting. In an odd way, it was somewhat of a blessing, because we have what modern medicine calls an answer. As Jessica mentioned to the person making the call, this wasn't the worse answer she could have heard - if the test had been inconclusive, or they couldn't find anything, that would have been heartbreaking.

In the early afternoon, the mail brought a card and a gift that moved both of us to tears. Tom's cousin had made a rosary using a crucifix and central medal that had belonged to his deceased Aunt Carolyn. "Auntie Karen," as the family calls her, died when Tom was young, but he has distinct memories of visiting her when she was hospitalized. Just a year or two ago, Tom's Grandmother shared a binder of memories, including some of her artwork and notes. But what struck Tom most from that binder were the notes from the staff that cared for her - cared for someone who couldn't thank them. Regardless, the rosary has already taken a special place in our family's life.


Later in the afternoon, Jessica actually visited Mount Carmel's MFM for a regular visit and ultrasound. While the fluid levels seemed the same, and the kidneys had not enlarged much, we had a small victory - Caroline's bladder was visible! It meant that her kidneys had produced some fluid that would soon be added tot he amniotic sack. Despite the best efforts over all the other ultrasounds and the MRI, this was the first time anyone had ever seen it, nevertheless seen fluid in it.

Thursday morning, both of us returned to MFM for a meeting with Katie the genetic counselor. She had been on vacation (and thus wasn't the one to call Jessica on Tuesday), but this was our chance to ask questions and take the next step of having ourselves tested to confirm if one or both of us are recessive carriers. We should have the results in the next few weeks.

Caroline's MRI

Tuesday, February 12, 2019 was an important day getting to know Caroline and her conditions. Jessica started with an early afternoon check-in at Nationwide Children's Hospital in downtown Columbus, and headed to their MRI room. After the test Tom joined Jessica in the lobby for an ice cream sundae-- Jessica's reward for being cooped up in a tiny hole for over an hour!

This second part of the afternoon was our first in-person meeting with the prenatal hospice team. Consisting of a Social Worker, Dr Amy Schlegel (a neonatologist), Becky (nurse coordinator), and someone from the pastoral care team. The team started by asking us to talk about our experience to date and some of the other support people on this journey.

We discussed their experiences in these situations, and they shared their professional opinion that  honoring Caroline's life and legacy is one of the most valuable ways for us to successfully make it through such a challenging experience. They frequently see individuals and couples in denial, and briefly shared how damaging that can be. The team loved our therapist's approach to telling our children, and offered some additional suggestions and insights, including some additional children's  books.

Ultimately, we looked at the MRI images, which were some of the clearest pictures we have to date. Caroline was snug in her womb, head down, and sucking her thumb - happy as a clam. There were no signs that she was in pain or suffering.



Turning to the actual issues, her large kidneys, cysts and all, were readily visible on the first images. As they scrolled through, we could also see her eyes and other features. Dr. Schlegel also showed us the shape of her head and we discussed what that could look like after birth.

Among the toughest news was to share about her underdeveloped lungs, and the impacts the brain development may have. Dr. Schlegel noted that Caroline developed a brain stem, which is the part that rhythmically sends the messages to breathe. However, with lungs that small, we're not able to tell until she's born how much oxygen she'll be able to assimilate into her blood. She also lacks a normal amount of amniotic fluid (which we knew from previous ultrasounds) which is needed to "practice" breathing in the womb and develop the lungs.

Dr. Schlegel also talked about how pain mitigation in newborns is administered through the nasal passages - if Caroline shows signs of distress right after birth, needles are not necessary to provide her comfort and how any administering of medication will be our decision.  We had some tough conversations on how short that time in the room could be although of course these are all just estimates and in the end up to Caroline.  We also started discussing, our options and the basic understandings about what will happen during our time with Caroline. In the end we are in the drivers seat and will be reflecting more about how that will look in the coming weeks. 


 As our team grows, and our prayer warriors still fight the good fight, we continue to care for our Caroline in the best ways we know how.  For today we enjoyed pictures of our precious baby girl--who is just so loved!

Visit to Maria Stein

Sunday Morning, February 10th, Jessica left early to make a pilgrimage to Maria Stein and the Shrine of the Holy Relics (just under 2 hours away from our house), with Caroline's Godmother, Norah. In the late fall we asked our family friends (Norah and Pat) to be Caroline's Godparents. Being a great godmother, Norah had the idea for, and did all the planning, for what turned out to be quite the mother/daughter/godmother day trip.

The ladies started with a mass in a nearby church in Minster - St. Augustine, which was built over 150 years ago. During mass, Jessica had the feeling that God had been asking her to be there all along, although she had never been to the town of Minster.

After mass, Norah's cousin hosted lunch for the ladies in her home. While the original plan had been to continue on to the Shrine, some of Norah's plans came together at the last minute.  The ladies headed to Sacred Heart church for a private meeting with a Priest who has a special devotion to St. Philomena, a patron saint of infants and babies. Jessica learned some of St. Philomena's history, but they stayed with the priest for some very meaningful and holy time while the priest prayed with the ladies. He mentioned that she was a powerful saint, and suggested that Jessica continue to pray for her intercession.  (Prayer is below-please join us in this prayer to St  Philomena).

Throughout the trip, Jessica had an open heart to whatever the schedule (and the weather) provided, and although they sought to visit the Shrine of the Holy Relics, they did not arrive until almost 30 minutes after closing. Through some divine intervention, they not only achieved some after hours access, but some special prayers by a Sister of the Precious Blood. The Sisters oversee the Shrine, and while Jessica enjoying some peace with the relics, one of the Sisters came across Jessica. The staff member who provided Jessica and Norah access told the Sister, who was moved by Jessica's story. The Sister offered to pray with Jessica, and the ladies observed that the prayer was nearly the same words as used by the priest hours earlier. The Holy Spirit moves people in all locations, and makes its presence known in unique ways.

The ladies shared a slow and careful drive back through strong wintry-weather conditions, arriving quite late, but arriving safe nonetheless. All in all, it was a moving, grace-filled experience.

Tom's day started with Jessica's parents' help getting the kids to mass at our parish, St. Mike's. Deacon's homily focused on the call to discipleship, particularly in marriage. In another unique twist of fate, the priests celebrated Monday's Memorial of Our Lady of Lourdes by offering healing prayers after mass, making special call for those who sought prayers for the healing of others.

By Monday evening, we were preparing ourselves for tomorrow's important appointments - the MRI and consult with the prenatal hospice team.