Shrine of Blessed Margaret

Sunday the 24th, we made another mini-pilgrimage. For some time, we wanted to experience St. Patrick's Church in downtown Columbus - it's administered by the Dominican Friars who are in charge of advancing the cause of canonization for Little Margaret. We took a chance to go to mass with just Jane, and afterwards, to visit their shrine to Blessed Margaret of Castello. They have several relics, including a large piece of her uncorrupt heart, which they venerate every Wednesday, in hopes that she would intercede for another miracle.We know God grants them, and we're just hoping that Caroline might be granted one.

The next day was a phone call at noon with the Doctor of pathology at Nationwide Children's who performs autopsies. This is one of the many decisions that weighs heavily on our hearts as we plan for the very different set of events that will happen after Caroline's birth. Many people obtain an autopsy for the purposes of confirming a diagnosis - something we're blessed to actually have through the amniocentesis. Sometimes an autopsy can advance the medical field - however, we're not sure whether that's among the purposes that God has for Caroline's life. Nationwide Children's does have a very large "tissue bank," where some of Caroline's tissues could be stored for future studies of all kinds. While we're unsure if any of the more than millions of samples in the bank come from confirmed Meckel-Gruber babies, Caroline could be the first that they've seen in person. 

In and of itself, the disease is not widely studied. In part, Katie (our genetic counselor) educated us how rare it is, and how complicated the gene-identifying can be - there are many variations of several different genes. Jessica has one variation, Tom has another and, because Caroline got both recessive genes, she has both variations. The doctor who does the autopsy is also a professor at Ohio State's medical school, so those results would likely be shared with students, if not studied directly by those students.  Overall, we have some more thought, analysis, and prayer to complete before we decide on how we treat Caroline after her passing. 

After the call we then headed downtown for a late afternoon visit back at St. Patricks - this time with Father Stephen Alcott, the pastor, to learn more about Blessed Margaret. Fr. Alcott was also able to bless a medal of Little Margaret for Jessica.  Since there's nothing that can be done medically, the only thing two parents can do is hope God intercedes with a miracle.

On Friday, we ended the week at a fish fry with some friends, and ended up back at their house. There, they gave us a beautiful gift from friends - a family sign, that includes all of our names, most notably Caroline's. It's the first tangible way we've had to keep her name in our house, as a part of our family.  It was such a special gift and we were just speechless.

The Week after St. Patrick's Day

Back in February, Jessica was at a conference when God used a stroke of his grace to lead her to interact with an acquaintance who knew about Caroline. It had been on that person's heart to connect Jessica with someone who had a strikingly similar series of events. As a result of that encounter, Jessica learned about Lynn, and through Lynn's reaching out, they met for lunch on Monday.

Just a few short years ago, Lynn and her husband were in an astoundingly similar position. They had three children, nearly the same age as ours are now, and had never had a problem with pregnancies. Yet their fourth came with a fatal diagnosis at the 18 week anatomy scan, and the strength of their faith carried them through. As fate were to have it- Lynn was seeing the same OB as Jessica, and they delivered at the hospital where Jessica is planning to deliver Caroline. They also wrote a blog, and now have a unique ability to offer advice on how they weathered such a storm.  Jessica and Lynn talked through their experience which provided a visual about how things could go.  It was comforting to hear how they've handled matters after such an overwhelmingly traumatic event.  All told, the discussion had an indescribable impact that will take some time to unfold, as our families interact at different points on the same journey.

In the mail another gift arrived - a rosary from Tom's cousin, Liz. We've been praying a lot of them recently, and this one is now so special to us. Liz explained that the butterflies are symbolic of the Resurrection and new life after death. The pictures don't show how colorful the beads are - a white pearlescent.  You can tell much love was put into making this rosary and we will treasure it.


Jessica had another visit at Maternal Fetal Medicine on the 19th - another ultrasound, with the same reality of Caroline's conditions. It was especially sad to give Katie, our genetic counselor, one final hug goodbye right before her last day as he moves to another state. More than her ability to answer some of the toughest questions through this, she's been someone who shows a love and appreciation for Caroline and continuous support for our family.

Jessica's Uncle Chuck, the deacon who's baptized all of our children and Aunt Rose who is the most upbeat and fun person around, paid us a visit for a few days from Arizona.  Her uncle is a nurse anesthetist by trade and a deacon by vocation: he had some unique insights on the situation for both of us. He's been in some tough situations and was able to share some stories about similar situations both from a medical and faith perspective. Aunt Rose also was an amazing person to talk to--she always has a great listening ear and unique perspectives.  Uncle Chuck also blessed our house while he was here - with the kids involved, and Edward took a special liking to the holy water sprinkler. 

We had another appointment with our counselor. Her recommendation was to slow down the process of telling the kids. Some signs indicated that the kids needed a little more time to process, and we have time - a luxury many families don't have. As a result, they know that something is wrong with Caroline.  We are learning to navigate situations like when Jane asked to pray extra hard for Caroline because when her friend Audrey broke her arm, she prayed real hard and Audrey got better. Secretly, our hearts break because we wish it was that easy. However we just told Jane this is a little different than her friend's arm, but we will pray extra hard for Caroline.

Meanwhile, Andrew has developed an incredibly endearing habit. He asks to "see" Caroline, meaning he wants Jessica to lift up her shirt. Then he talks to Caroline, as if he can see her through Jessica's belly button. And when he's done, he tells Mommy to "put your tummy away" and Jessica lowers her shirt. Andrew has a particularly close relationship with Caroline: he frequently puts his hand on Jessica's belly trying to feel her kicks, and he often talks to her.

Visits and prayers

In early March, Jane's Godmother - our own Auntie Anne - happened to be in the midwest on a work trip (all the way from Connecticut), and drove a few hours to spend a few days with us.  During the visit Anne was able to experience Caroline-something she could then take back with her to the rest of our family in the Northeast.  We took some time to listen to Caroline's heartbeat on the monitor. The kids - especially Jane - loved having Auntie Anne   to read bedtime stories and teach her the finer points of Go Fish - and we loved having a little relief from life's routine.



Before her visit, Anne crocheted a blanket for Caroline and shipped it out. We held it in the box until we had a moment during her visit to open the beautiful gift that will wrap Caroline forever. It is so comforting to us to know that she will be wrapped with love from her Auntie who cares so much.

Recently, one of our friends has taken the initiative to organize a novena to blessed Margaret of Castello on our behalf. While we were at a Couples by Candlelight dinner at our church on Saturday, March 9 she introduced the Novena to the crowd. It was an exercise in humility sitting among our friends as she talked about our situation. Yet we experienced an overwhelming sense of love for Caroline and support for us as we put this in God's hands and ask for his help.  It is not about us--God is using this concept to mold us in ways we aren't fully aware yet--but it is important to keep our trust in Him.  When we feel lost or overwhelmed we often repeat "Jesus I trust in You."  This short prayer helps us submit to God and His plan for us and our family.

The next day, Jessica's high school friends surprised her with a mini reunion over brunch. (Although they should have known better than to catch a pregnant girl so off guard and not bring tissues!)  It had been too many days to count since they'd been together, and her friends went out of their way to make it happen.  There is nothing like old friends--they don't talk every day but the second they get together they pick up where they left off.  There is no holding back, no explaining and lots and lots of laughing.  It is comfortable in a way that sort of impossible to describe and it is exactly what everyone needed.



Tom successfully slid another birthday into the books. Since Tom had a night meeting on his birthday, we took Caroline to a fancy restaurant on the night before - even if it was only for dessert. On the night after, we had ice cream cake at home with the kids-- all four of them.  It was nice to celebrate as a family.





Per our priest's recommendation, we had planned a pilgrimage to the Basilica and National Shrine of Our Lady of Consolation in Carey, Ohio for Friday the 15th.  Tom's work day had turned from one problem to the next, and Jessica discovered that they had switched times of the healing mass.  We decided to postpone the trip and will take Caroline there in a few weeks.

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....