Novena

During this journey, we've learned that so long as there is hope, even some of the toughest burdens can be a little lighter. We find great hope in how many people are praying for Caroline - she's what this is all about.

We started prayed the novena on April 5th, for the 9 days leading up to Blessed Margaret's feast day. Each morning that we prayed the novena, Tom had a chance to start off talking to Caroline, and then offering a prayer from his heart. If her kicks were a way of saying she liked it, then she liked it a lot. Tom would share a little about what was going on, and tell Caroline we all love her and are praying for her. The informal prayer usually had themes of love, mercy, grace, strength, and acceptance of God's will (not our own), while still sharing hope that Caroline can have a long and full life with us. Then we would pray the day's novena prayer together, with the relic. We know God is here with us, and by praying with a relic of someone in heaven, we have a better understanding of the connection between us, saints, and God. While it's amazing to know that we have God's ear - the God who grants miracles and can do anything - it's still an act of surrender to know that a miracle is not ours to give. The only thing we can do is to believe with strong faith, ask through constant prayer, and hope in His amazing mercy - all for His glory.

Blessed Margaret's feast day is April 13, and this year it fell on a Saturday. As further proof that God has a plan long before you know it, back in January, some friends of ours had arranged a mass for us, and it just so happened to be the Saturday mass on April 13-Blessed Margaret's feast day-WOW!! We started the day at St. Michael's, with our kids and some of Caroline's prayer warriors. It was so great to see so many people that have been praying for Caroline at the mass.  What a blessing to have never felt alone during this time but wrapped in love by so many.

From there, we headed back to St. Patrick's in downtown Columbus. The novena we prayed was published by the Blessed Margaret Guild (organized by the Dominicans at St. Patrick's). Father Stephen Alcott, O.P. made some special time to be with us to venerate in the Blessed Margaret Shrine.  Some friends were also able to join us for the special veneration.


St. Patrick's has several relics of Blessed Margaret, and their most prominent is a large portion of her uncorrupted heart. Her biographers document that during her lifetime, she would frequently say, "if you only knew what I carry in my heart." Many people thought she was referring to the suffering that she carried - all with a sense of peace, acceptance, and joy. However, she actually carried three stones in her heart, each with a different image, that were revealed after her death. Her heart must have been strong - both literally, for overcoming her physical deformities to care for others, and physically to carry the stones. What an example for all of us.

After the 9 day novena ended, we've continued to offer daily prayers using the Novena Prayer (below). We will continue to do so through Caroline's birth.

Novena Prayer

During this journey, Blessed Margaret of Castello found us, and we've spent considerable time learning about her and welcoming her into our family. One of our friends (who originally introduced us to her) found a novena - a set of prayers said on nine consecutive days and suggested we start a prayer network. She spearheaded an effort to obtain brochures from Blessed Margaret's national shrine and share them with our parish.  Of course her efforts exploded with the Holy Spirit - far beyond our family and friends (from all across the county) and our St Michael's community but faithful people from all over started reaching out to us.  We had friends from outside the parish let us know they were joining, acquaintances share how people they knew and prayer groups were praying, and even a few complete strangers e-mailing us to tell us that they were with us in this novena.  So many people were letting us know they heard Caroline's story and shared in our love to pray for a miracle.  We couldn't have imagined how wide this ripple effect of prayer would go.

We can't say thank you enough to everyone who walked this part of the journey with us (and continue to pray for our family and for Caroline).

Carey Ohio

Several weeks ago, we planned to make a short trip to Carey, Ohio, to visit a shrine known to provide miraculous healings for over a century. At the time our plans fell through, we rescheduled for April 5th before we fully understood what was really in God's plan. It wasn't a coincidence that it happened to be the first day of the novena to Blessed Margaret (which we hadn't yet discovered) - another one of those "God Winks." Thanks to Jessica's parents for babysitting, and some flexibility from Tom's work, we were able to head up Friday evening.

The Basilica and National Shrine of Our Lady of Consolation is located in a small village less than 2 hours northwest of our home in Westerville. Started in 1875, the shrine is dedicated to Mary's role in providing relief to those who are afflicted in various ways. The devotion dates to 17th century Luxembourg - amidst the plague, people asked Mary for God's intercession for relief. The Pope from that time period commissioned a statue that is now in the Ohio shrine, and people who have asked for Mary's help before the statue have received God's blessings.

We arrived late afternoon, and had a chance to quietly walk through the shrine - virtually by ourselves. We started in the undercroft, which is filled with beautiful statutes, and an immense collection of 1st Class relics, including some of St. Peter (Edward's middle name) and St. Andrew (who we named our son Andrew after). There was also a cabinet of items testifying to decades of miraculous healings at the shrine - old crutches and braces that had been left behind by those who no longer needed them, to letters and pictures of those who had been blessed with a miracle.  When we learned that this is only a small sample of what was left behind, we realized we were in the right place.

Upstairs, the main church was stunning, with an incredible amount of detail and devotion under soaring ceilings and gorgeous stained-glass windows. To the right of the main sanctuary, hundreds of candles were placed before an altar with the statue of our lady high above. Each flame of hope briefly carried a passionate prayer for healing through our Lady to our Lord. On the other side of the sanctuary was a stone monument to Mary's suffering at having experienced the death of her son.


The original wooden church was not open, so before we headed to dinner, we browsed through the bookstore. For some time, we'd been offering some prayers to Caroline's guardian angel (and to our own angels as well), and we had been looking for a reminder of their presence for our house. We found a beautiful guardian angel statute to serve that purpose. While checking out, the ladies who worked there gave us some advice on what to expect from the healing service. Since it was a Friday during Lent, and since the shrine is a functioning parish for the people of Carey, there was a big fish fry for dinner in the social hall across the street. Before mass we headed back to the church and watched the parish teens lead a living Stations of the Cross.

As mass ended, the priest gave a short talk on what to expect in the healing service. He started with adoration/exposition of the Blessed Sacrament (where we can experience Jesus' presence right before us), and then people came before the altar to be prayed over. On our turn, we shared with him briefly about Caroline's diagnosis, and he offered some words of compassion and hope. He responded not only by anointing Jessica, in that Caroline is very much a part of her, but also praying over us for Caroline's healing. He left us with a simple request that Tom pray with Caroline every day, and that we try to find a priest to pray frequently.

Little did we know that the following day, God sent our new Bishop (who's been on the job for less than a month) to answer that call. It is funny how God outdoes himself in generosity - we shouldn't be surprised that when we prayed for a drink of water, he delivered a reservoir. Tom's K of C Council participates in an annual softball tournament and pig roast at the seminary here in Columbus - one of only two owned by the Pope outside of Italy. Early in the afternoon, the new Bishop of the Columbus Diocese made a surprise informal visit. While lining up for the meal, we shared with him about Caroline and spent a significant amount of time  praying over us and Caroline.  (Thanks to a good friend, Emily for capturing such a special moment). All in all, we really appreciated a day of friendship, with chance to be in the fresh air and sunshine.  

Second Week of April

This week began with our Parish mission.  The experience was both prayerful and impactful for our family.

On Monday night, we had another counselling appointment, and we made it to the mission right when Eucharistic adoration and confession began. God was so good to plan for us to arrive on this schedule. These moments were a small rest and calm in the presence of the greatest power in the universe - such a contrast to the powerlessness we felt earlier discussing how helpless we feel at times. Sitting there in the real presence of our Lord, there is so much hope in God's mercy, so much peace and comfort in these moments where He helps lift the weight from our souls. This week we really felt that hope - not only from our own prayers, but inspiration from how many other people were joining us in praying for our Caroline. As we approached the novena to Blessed Margaret, we also had hope in the intercession of our family and friends in heaven - that they can help carry our prayers to God and advocate on our behalf.

This was also the first time we saw the prayer table for us that our parish had set up in our church lobby.  The table was beautiful with a picture of all of our hands surrounding Caroline accompanied by the novena cards and a short message about our family.  We wanted to mention because it looked like it could come straight from Pintrest and were wowed by such attention to detail.

On Tuesday, Tom had another work meeting, but Jessica had the chance to attend mass with the Parish mission. In his homily, Father talked about the importance of praying for others. When we pray, if we don't have a specific person in mind, then he suggested we pray for the first person we see. It is part of our normal morning routine of praying a decade of the rosary with the kids on the way to school. Father's homily inspired us to start a new tradition. When each of the kids share their intentions, now they also each pick out a random car driving by to pray for the people in it. It has been beautiful to witness how this has impacted their prayer life and planted another seed in their hearts.  In his homily, Father included a brief moment talking about praying for Caroline and mentioned the novena that will begin shortly for Caroline--asking God for a miraculous healing through the intercession of Blessed Margaret of Castello.

God works through our suffering and the suffering of others.  During the mission, we also had a chance to hear about some other people in our parish and broader community who needed prayers - some with health issues, strained family relationship, and some whose faith has been challenged. While there is much suffering to share, we find it encouraging to offer some hope and prayer in return for those who are supporting us, and to unite our prayers for more universal means.

Tom, continues to struggle as he goes out into regular society, and sees a different side of this, particularly among the stir from the release of the movie "Unplanned," and the passage of Ohio's heartbeat bill last week. As we mourn what our child won't have and what we want but can't have, we know that we've given our daughter another day of peace and comfort in a mother's womb. And another day of life is all each of us can ask for every morning that we wake up.

Some preparations

This first week of April, we worked on a few things to prepare for June. Thanks to the blessings of extended family, Caroline's casket will be hand-made by her Grandpa Schmitt, Great Uncle Peter and Uncle Mike. We can't express how much their offer to hand-make such a special gift for Caroline meant to us. The love they have for her is so real. One thing is certain, people's love for our daughter far exceeds what could fit in her time here with us.  What an incredible testament of compassion from a loving Grandpa.

On Tuesday, Jessica had another check-in with Mt. Carmel's MFM, but this time our friend Norah (and Caroline's godmother) joined to see the ultrasound. It was so special for Norah to be apart of this visit and experience her goddaughter thriving on the screen.  Caroline was practicing breathing the entire time - something rare at this stage, as most babies practice only a few breaths, then take a break. The doctors said this was a good sign for an indication of lung development. Also, on a positive note, her bladder was visible again, and there was actually slightly more fluid. One slightly shocking realization was that  Caroline's kidneys measured about the same size as Jessica's.  We knew they were enlarged but this gave us a visual of the scope of her condition--between 9-10 cm.

Jessica and Norah followed that visit with some amazing emotional strength, and completed the tough task of purchasing a burial outfit. Norah's support and kindness were true gifts that made an impossible task bearable.  It's a beautiful white gown that again, we're hoping God gives us the chance to use it for something else instead. When he saw the dress, Tom's feelings were both happy at how beautiful it was for Caroline, and sad as he thought of all the dresses that she wouldn't get to wear as she grew up, from ones for daddy-daughter dances, first communion/confirmation dresses, a prom gown or two, dresses for graduations, and a wedding dress - and all the events/growth that each represented.  Regardless, there is some small comfort in knowing that when the time comes, Caroline will be beautiful, and the dress will match.  It is also comforting to have it prepared in advance so that time comes we can solely focus on her and our family.

Thursday morning was one of the hardest experiences in all of this. We had a morning appointment at the cemetery to finalize some plans, including the specific site, and design of the grave stone. We're amazed again by people we met on this journey - hearing the cemetery staff's stories of God's interactions and blessings, and sharing our hope that they don't ever have place the order. It's all such a reaffirmation of the value of life itself - life as the most fundamental aspect of being human.

Thursday night we came home to catch up, and to get ready to start the Novena to Blessed Margaret with all of our prayer warriors.  It begins on Friday.

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.