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.