A Message for My Daughter

Thank you for coming. To those who have come from near and far to be with our family, we thank you. And to those from other faiths, or for those who haven’t been here in a while, welcome to St. Michael’s. Finally, from both my heart and Jessica’s, thank you for being a part of Caroline’s life.

We gather here to celebrate life – both on this earth, and in the next. Yet today, here in this church, we’re struggling for words to fill that celebration. In large part, that’s because it’s impossible to define “life” - in here as well as outside in society.

Lawyers always agonize over words – especially definitions. We twist out every possible interpretation and complicate everything, even for the most fundamental and basic words. But when it comes to putting, feelings, emotions, and philosophical ideals into words - we come up short, because we’re searching to define the inexpressible.

When it comes to funerals, the coffins at the altar hold a person with a life story. But even then, we all struggle to define it. Some use adjectives like “long,” “full,” or “great” – these words work for those who had duration, children, some unique experiences, or for those who had measures of achievements. Those words help ease the suffering by knowing that a life was "well-lived." Others feel a need to describe life as if it had varying degrees of quality. But it doesn’t: there is just simply “life.”

Caroline’s life escapes words. I can’t use pain, or suffering, because that’s what we had and still have - those words never applied to her. Innocent is a word that wholly applies, but that doesn’t come close to filling the space. Likewise, the words, “simple,” “real,” and “pure” - they all apply, but they don’t fill the void we have here today.

Taking a moment to look at the void, amidst our pain, suffering, and sorrow, Jessica and I would do it all over again. Why? That’s a one word answer: LOVE.

Through Jessica’s love, Caroline had 9 months to grow with us, to experience, to feel, and after a time, to hear. And then… under the medical definition of life, Caroline had 32 minutes to live. You see, doctors get to cheat - they get to narrow the field in which they have to define life. They get to stick to raw observations. They don’t have to incorporate soul, or emotion, nevertheless faith.

But without life, we as mortal humans can’t do anything else. We can’t breathe, or taste, or feel. Without life, we can’t offer a helping hand, or make someone’s day with a smile. Without life, we can’t have faith or inspire it, and we can’t have the hope that Jessica and I had, and still have. And if we don’t have life, we can’t love. If love could be measured in quantity, the love that I have for Caroline as her father: it’s all just a mere drop in the ocean of Jessica’s love as her mother.

While Caroline’s life was born out of our love, we can’t give her life today. When I started thinking about this during adoration a few weeks ago, the first concept that came to mind was "31 minutes," and what I would do to give her one more. God gave us 32. All this pain and suffering? I’d do it all over again to give her a 33rd minute, and then I’d give anything else just to give Caroline a 34th. But we are not God, and as I struggle to find the purpose in this suffering, I surrender to his will.

And while those 32 minutes were the entirety of Caroline’s experience after birth, to the rest of us, they’re nothing. I have in my head Dave Matthews’ song, “Funny The Way It Is” - a series of everyday juxtapositions. Those 32 minutes of Caroline’s life are a TV show or my own toddler's temper tantrum. They’re someone’s morning commute or the drive to get to dinner with a friend. 32 minutes isn’t even a high school class period, or enough to meet the FAA’s guideline that your plane is delayed. I could write a book on that topic of being 32 minutes late. And those 32 minutes felt like only three scrolls on Facebook.

Yet, for those 32 minutes, our worlds stopped, because those minutes were Caroline’s whole world. Anywhere else - any other time - if someone stopped and devoted  32 minutes to you - a phone call, a lunch, you’d thank them for the act of love: love for family, love for neighbor - all in service above oneself. They say that the greatest act of love is to give to those who can’t even thank you in return. While Caroline couldn’t say the words “Thank you,” or give us a hug or smile, we still love her all the same, and she still can thank us, and has been already thanking us, from above.

Throughout our journey, there was a small army of people praying for Caroline. Small is relative - it was a BIG army. And to that army, Jessica and I express our immense gratitude. But now, we can pray to her. With prayer warriors like this, we can only imagine the prayers that Caroline is bringing to heaven. I was talking with someone recently, and this image came to mind: that Caroline has an answering machine in heaven. It was filled with voicemails from our prayers. It has an unlimited capacity to store messages - since the souls up there have an infinite amount of time to listen and respond to them. And while this journey has shown us the human end of those prayers, I can only imagine what it must be like to be on the divine end, and being taught how to use them in heaven. Caroline may only have been a little human with us, but she’ll grow up to carry some big things in heaven.

Our daughter Jane told us that Caroline gets to grow up with God. Like all parents, I feel my faults, weaknesses, and failures as a dad. Caroline must be truly lucky to have the perfect father to raise her. While I don’t get to raise her, I’m sure God as father knows what he’s doing.

We can find some comfort, purpose, and meaning for Caroline’s life because it generated love, prayers, and hope that were all around her while she was on this earth. But all that still leaves me still searching for words - searching for the inexpressible. Aldous Huxley might not have a lot I can bring into church, but in his words, “after silence, that which comes nearest to expressing the inexpressible, is music.” Funny that “silence” and “music” usually don’t have words. While I usually find words in Dave Matthews songs, today I end with this verse from Marc Broussard:

May the mountains rise to meet you

May the skies open wide

Know that in my heart, [Caroline,]

You will always be alive

May the angels fly to greet you

You can see it all from up there

I know you're listening from up above

Because this is, and will always be, my prayer

And with that, we say we love you, Caroline Mary.

Arrangements and Details

Celebrations of the Life of Caroline Mary Schmitt will begin with a mass of Christian Burial on Saturday, June 22, 2019, at 10:00am, at St. Michael The Archangel Catholic Church, 5750 N. High St., Worthington, OH 43085.

Internment will follow with a graveside service at Resurrection Cemetery, 9571 N. High St., Lewis Center, Ohio.

Our family will return to St. Michael at approximately 12:30 p.m to receive guests and visitors at a luncheon at Marian Hall.

All are welcome to attend any of these events.

Note that High Street will be closed in Worthington due to the Farmer's Market and other planned events that day.

In lieu of flowers, please consider contributing in memory of Caroline Mary Schmitt to either:

Mount Carmel Foundation - MCF MCSA Fund (scroll down to "tribute information" and please use Caroline Mary Schmitt), to honor all of Jessica's and Caroline's care providers at Mount Carmel St. Ann's Hospital (MCSA), from many departments, including the Maternal Fetal Medicine department, Labor/Delivery/Postpartum and their bereavement program.

St Michael the Archangel, (see "Quick Give" in lower right, and in the Special Instructions, use Caroline Mary Schmitt) in honor of Father Dinovo, who has provided so many blessings in this time of need, and our entire church family there and at many other parishes who continue to carry us.

Additionally friends have set up  a Meal Train for us.

Thank you all for your prayers and support for our family. At a later time, we will provide a post with the events around Caroline Mary's birthday on June 17th.

In Memory of Caroline Mary

In Loving Memory of

Caroline Mary Schmitt

Born Monday, June 17, 2019, at 11:52am
Mt. Carmel St. Ann's Hospital, Westerville, OH

Weighing 8lbs, 3.3 oz,
Measuring 17.5 inches

Delivered by Dr. Alan Murnane
Nurses Beth, Malia, and Laura (doubling as Photographer)

Baptized, Confirmed ("Margaret"), First Communion, and Anointed by Father Anthony Dinovo
Godparents/Sponsors Patrick & Norah Fagan

A life filled with love, hugs and kisses from Mommy, Daddy, siblings: Jane, Edward, and Andrew, and grandparents Ed and Anne.

Already on her way to heaven a few moments later by 12:24pm

She indeed made this world a better place in her short time here with us.

Thank you everyone for your love, support and prayers.

Almost Time

As June arrived, our hearts grew heavy. The people at Tom's work have been supportive, and they have temporarily diverted some of his workload and kept the schedule light expecting him to be out of the office. Yet as we have those empty weekends, there's a nervous energy around the house, knowing what's to come. We've had friends and family checking in, and a few people have brought meals this week as well. Normally sleeping becomes a challenge at the end of a pregnancy (and right after), but this is a new experience.

Throughout the day, Jessica has continually had visits from friends during the days when Tom's at work. On one occasion, Kellyn, who led the church group we participated in last year at St. Paul's (the church closer to our house), visited to chat, and follow up with a prayer request among the group. And Kellyn even brought some flowers to brighten our home.

In the week leading up to Andrew's Birthday, Jessica started having some early labor signs. For the sake of Andrew, whose birthday is (and will be) June 8th, we hoped that God planned to give Caroline a different day. It's a true leap of faith to leave things completely in God's hands, as he could have chosen to give us a sad memory that we would carry every year while trying to celebrate Andrew. Yet maybe God knows what we really need - that we need something to share the date so we don't let it overwhelm us each year.

Thanks to some family, we had a few things ready to go for Saturday, and we were able to have a quick and quiet dinner, with some cake, complete with paper plates and napkins with his favorite cartoon character (Super Why! of the PBS Show). We think the kid just loved having some attention, and this year, we were blessed that we got to share it with him.

While we normally feel at home at church on Sundays, this one was exceptionally tough. As the parish grieves the death of a longtime parishioner, we held our own tears back thinking that this might be Caroline's last mass in St. Mike's. Without us knowing about it, our family's picture was given a special place in the main church, on the Altar dedicated to Mary, the Mother of Jesus. As a family of 6, we stopped for a moment in prayer, before embarking on this week. Even though Caroline receives a piece of Jesus each time Jessica receives communion, we have some hope though that there will be a chance for at least one more time - even if its in the hospital - before Caroline goes to be with Him in heaven.

Special visit and graduation

On Memorial Day Weekend, we hosted Jessica's brother (Erik) and his family as they stopped on a drive through town. They live in Memphis, and were headed to Youngstown to settle in as Stephanie prepared for a procedure at the Cleveland Clinic, followed by a few weeks of recovery at her family's home. The short stay was a chance to enjoy some "quiet" family time, complete with a fire outside and some S'mores.  Just the break both families needed.  The kids had an absolute blast-- and so did the "grownups".

Jessica also had her last visit with Maternal Fetal Medicine at Mt. Carmel, and we both attended for one last ultrasound. Caroline had her hand on her tummy, just like mommy rests hers, and her heartbeat was still strong. We didn't get to see the Doctor who had been primarily caring for us, but we were able to share some hugs good bye with staff. We also took a quick walk from their office over to the check-in station for Labor and Delivery, just to make sure we head to the right place when the time comes. In a very heart wrenching moment, one of the staff members shared how that day, two mothers were already in the hospital for deliveries just like ours. We can only imagine how challenging that work must be - to care for families like ours on a daily basis.  We hope they know how much their care and compassion means to us and other families like ours.

As May drew to a close, we marked milestones at school, with Edward's promotion ceremony from pre-school, and Jane's graduation from Kindergarten both at Our Lady of Bethlehem. This school has been so supportive and loving throughout this process and we can't thank everyone enough for all they have done.

Making Memories

In May, we took an afternoon to head to Nationwide Children's for a chance to make some memories as a family. Nationwide staffs and supplies a family art room for child patients to have family fun time and make positive memories. While Caroline couldn't participate in the way our other children could, the afternoon was a chance to take a few suggestions from their professionals on how to help our children (and ourselves) through this time. Throughout this process, they've been here to offer some children's books explaining "special births" to coincide with our counselor's advice, along with some other helpful suggestions on how to capture this short time as a family of 6.

We started by making a hand print canvas, saving some space for a later time when we can add Caroline's. Each of us got our hand painted  - something a little different and fun than the normal messes the kids make each day.

We also took some time to fill some Christmas ornaments. Each child had a short written message about Caroline to put in a small glass ball that will ultimately go with Caroline. Jane was able to write her own message in marker, and loved playing with the craft supplies. Edward chose some special "gems" for Caroline - he learned that emeralds were green and  rubies are red as he searched among the beads for sparkly treasures. And Tom used  6 colored pipe cleaners, one for each of us - to make a flower that is inside an ornament we can keep for our own Christmas tree each year.

 

Hope v. Reality - Tom's Perspective

Throughout this blog, we've tried to write in the third person as we share our collective story. While we are sharing this journey together, there are times when we experience things with different perspectives. Tom had some thoughts of his own to share, and so the rest of this post steps away from our usual voice into just Tom's.

I have continually experienced a spectrum between hope and reality, with a slow progression from the former to the latter as this journey has progressed. At the start, it was relatively easy to be inebriated with hope: through the strength of our faith, I could readily find comfort in God's love, mercy, and ability to grant miracles, and I had little knowledge and experience, and there was still time for something to happen. But journeys proceed with slow steps - our knowledge of Caroline's conditions grew, and we experienced watching her without seeing any healing. And there was always the growing reality that time (and opportunity for a miracle) were continually winding down towards the inevitable things that logically must follow. All of these test my hope and, to some extent, erode it.

Sometimes it feels like hope starts to leave, and then only reality remains. There's a helplessness that comes from an inability to fix the problem - something I struggle with, as serving others by fixing problems is not only my profession, but the core of my character. How could I be unable to help not only my daughter, but my wife and family? On the proverbial family road trip, can't I speed up so we all experience the mercy of ending the suffering car ride sooner? And as painful as it is, don't we all want this one road trip to last forever? There's a helplessness being so close to feeling Caroline through each of her kicks, yet so far away from feeling her give those big, smiling hugs his other kids give me. It's part of the helplessness that every father has walking past the broken toys on the workbench, as we have to give our time right now to some other more pressing need. But this is a level of helplessness far beyond that which we are supposed to experience.

There's times where I get too far in my own head - where I think about my own thinking processes (the million-dollar word for it is metacognition), and sometimes I go even further to think about why God designed our brains in a certain way. As that happens here, in this thinking about hope and reality, I sometimes see see hope as God's practical way of helping us through this journey. When there's a lengthy challenge, hope fuels us through the early stages, so that when we get to the later ones, we still have some gas in the tank to see it through.

At other times, I see hope as the mechanism which takes leads our minds to reach beyond to something bigger. In those times, our minds are limited to the reality we see and experience. Hope helps us rise above the current suffering and pain to recognize a higher purpose - from which we find strength to carry forward.

Through Caroline Mary, hope leads me to the higher purpose of supporting life - even if it will be "brief" (9 months + a few minutes) and not of the same "quality" that most get to experience. We hope that God gives Caroline the chance to experience more time on earth, and that God will use our suffering to show love and mercy. But even if the reality we know comes to pass, hope is the strength and faith is the heart that led us through an experience-one that we wouldn't wish on anyone.

Now, after getting this far inside my head, it's time to take a brief trip to the other side of my brain that's filled with bourbon, Buffett (and Dave Matthews), a boat, and a beach - that place we stayed on Anna Maria Island, to be exact.

Mother's Day and May Crownings

We started May with muted celebration, as Tom's Knights of Columbus Council honored us as Family of the Year. We had a fancy dinner for a modest celebration of our journey with Caroline, and brought the kids, even if they didn't fully understand why we received the plaque that they'll ask about when they're older.

Shortly after, we had a chance to celebrate the month of mothers at two May Crowning events. The first was at Jane and Edward's school, Our Lady of Bethlehem, where the ceremony started with special mention of prayers for Caroline. How lucky we are to have the school community--they are such a supportive presence for our family during this time.  Then, on Mother's Day, we attended Mass and May Crowning at St. Timothy's, where Jane and Edward participate in Catechesis of the Good Shepard.  It was an amazing God-moment when we realized we would get to celebrate Mothers Day with the Fagans - Caroline's Godparents. Godmother Norah had a special chance to spend some time with Caroline on such a special day - along with her other children. And we enjoyed having our families together, reminding us how we're all here to share each other's burdens and journeys.

Mother's Day itself was extra special for Jessica as she knew that she could celebrate with all 4 of her children.  We had started the day with blueberry pancakes in bed for Jessica, and continued on from church to more food - a great lunch out with some cards and presents - before heading back home as our family of six. And our neighbor left us some flowers on our front porch, with a beautiful note reminding us that although this Mother's Day may not be filled with all the joy that it usually is, and might be a little different than we wanted to celebrate, there are people who are wishing that we enjoy it. It was so very sweet of them to think of us.

At this point, Dr. Murnane (Jessica's OB) started scheduling weekly visits, the first of which coincided with the same day of another ultrasound at the high-risk department at MFM. Once again, there's not much that changes, but we were able to see the incredible way she sucks her thumb, practices breathing, and see her heart beat away at a healthy rate.  All beautiful gifts!

We were shocked with sadness as one of the teachers at Edward and Jane's school unexpectedly lost their baby boy who was delivered stillborn at 37 weeks. We saw them at the school picnic, living something much harder than our own experience, as they have no understanding or medical diagnosis/explanation why, and had no time to prepare or plan ahead and fight back the usual expectations for a new child.  Together we lift each other up in prayer and support.

Delivery Planning Meeting

On April 30, we had our delivery plan meeting - 15 professionals in a conference room to discuss delivery and postnatal care details for Caroline's birth. In terminal pregnancies, the team's main goal is to hear our wishes and (barring any extreme medical complications) try their best to adhere to our preferences and expectations for her arrival into the world.

The day started with another ultrasound to see Caroline, followed by a few private moments to coordinate before the conference began. The room was filled with Doctors (our OB, Maternal Fetal Medicine physicians, the neonatologist and the Perinatal Hospice Doctor), Nurse coordinators, labor and delivery nurses, social workers and our priests. Dr. Schlegel (the hospice doctor), opened the meeting by inviting the priests to start with prayer - a reminder that no matter the situation, not only is God present, but that he is in charge.

At the outset we shared with the team that assuming Caroline is born alive, our primary goal is to have her baptized. Fr. Dinovo has also shared that, given Caroline's prognosis, he can provide some  other sacraments short order. We also discussed our hope that Jane, Edward, and Andrew can be in a special nearby waiting room to have a few moments with Caroline, and that once she's born, the medical team will allow a special photographer in the room to capture our precious moments.

Turning to the more medical matters, we discussed with the team that we have chosen not to schedule an induction. Once labor starts, Jessica will not have the fetal monitors hooked up, and doctors will only intermittently check on Caroline's heartbeat/etc. This decision also relates to our wish that Jessica deliver Caroline without a C-Section, unless there is some significant medical emergency for Jessica's health.

We know that with these choices, Caroline may leave us before she is delivered.  However, we've consistently believed in leaving things to God's plan, even if His plan is not what we've wanted. There is a certain peace in not trying to control everything, and finding acceptance even in the most challenging times.

Before we're discharged from the hospital, the medical team will also confirm our choice to have an autopsy - not for our own knowledge, but for hopes to possibly help other families and the chance of any medical study or advancement.

Throughout the conference, Dr. Murnane (Jessica's OB) was a commanding presence and champion for her comfort, care, and her faith. And the conference ended with Fr. Lynch's closing prayer, including a Hail Mary and praying for the intercession of Blessed Margaret of Castello.

Dinner with new friends

Near the end of April, Jessica's Aunt Gerry came to visit.  Back in January, she had tickets to come 2 days after we found out about Caroline's condition, so she rescheduled her trip. She was a great help around the house with a whole lot of cooking and some babysitting, and we even got to thank her with an early birthday celebration right before she left.

One of the babysitting nights allowed the two of us to have dinner with another couple (Ben and Lynn) who had a similar experience in 2013 when their son James was diagnosed with Potter's Syndrome. A month earlier, Jessica shared some time with Lynn and had a mother-to-mother talk about carrying a terminally ill child.  That night at dinner, Tom was able to finally get to meet Ben, to hear a dad perspective, and share some of the practical things they experienced that we could expect. Even with such a heavy topic, the dinner seamlessly brought four people together in effortless conversation, as if our families were meant to meet.  As we shared about our interactions with our care providers and institutions - many of whom they worked with - Ben and Lynn enjoyed hearing the new ways they've shown understanding and focus on caring for families like us.

They provided a more personal (as opposed to medical) presentation of some of the roughest experiences to come, and shared some things they had done that were different than our plan. While they had scheduled an induction date, Lynn went into labor the day before, which Ben saw as the greatest blessing in a sad situation. We all shared the tough realities that come with deciding an induction date under these circumstances, and the peace and blessings from leaving it in God's hands.

We noticed how, even for such a short life, James has had a tremendous impact - not only on their family, but even now that he's impacting ours. Like ripples on a pond, James has cast a wide ring. We're just one ripple among many. We hope that Caroline's legacy would also have such a similar and long-lasting effect, and that it would also carry on to someone in the future.

Overall, amidst the pain and suffering they experienced, we could feel God's presence in their story, and we were reminded that even in the most challenging times, He's always present. Without the storm, we don't get to experience the calming presence He can bring. This year, one of God's gifts to us was Ben and Lynn (and their family). We are so grateful for them and for their encouragement throughout our journey.  They are now part of our story.

The Faith of a Child

Many people have asked how our other 3 children are handling Caroline's diagnosis.

In the middle of April, the world watched the fire destroy Notre Dame in Paris. Yet we were focused on our own home, and engaging our children with the reality of what is to come.

On the last day of the novena,  we could already see the prayers taking hold in our children. We were in the car driving home from St. Patrick's when Jane started talking about our friends' family. A few years ago their son, Samuel, died suddenly when he was only a few months old. Jane started asking whether we knew about Samuel - and that their family has a son/brother in heaven. We said we did and the conversation moved on to other topics.

That night, while tucking Jane in to bed, she asked Tom "if Caroline is born healthy, will Blessed Margaret become a saint?" Tom said that yes, and that is what we are hoping will happen. But Tom went on to say that if Caroline goes straight to heaven, God will give a miracle to someone else, and then Blessed Margaret could become a saint. Jane thought, and then stated that maybe it would be better if Caroline went straight to heaven. Tom struggled with the adult pains of knowing reality, but trusted God had a plan. The only words he could utter were to ask Jane why she thought that. Jane said because Caroline would get to grow up with God. She'd be a little older when we got to heaven to see her, but she'd grow up with Him and that would be better for Caroline.  Tom just sat there for a moment before kissing Jane goodnight. What a gift to have such a strong faith at 6 years old-he was truly in awe of  her insight and saw wisdom far beyond her years.  Maybe Jane....just maybe.

The following Monday, while Jane was at school, Jessica was sitting with Edward at the kitchen table.  After Jane's powerful conversation over the weekend, Jessica wanted to check that Edward had a similar awareness of Caroline's (most likely) terminal condition.  Jessica brought up our friends and baby Samuel, saying that they had a little boy who went to live with Jesus in heaven when he was a little baby.  Edward pondered the comment, and said "So Samuel went to live with Jesus in heaven right after he was born?  Jessica said "Yes, he did and he is now looking down on his family from Heaven but is growing up with Jesus."  Edward stared for a moment at the Legos in his hands, looked up at Jessica and said "Wow, Mommy!  I wish that would have happened to me when I was a baby!" And just like that, he jumped under the table and continued to play.  To him it was simple: to live with Jesus in heaven was the best possible thing that could happen to a person.  At that moment Jessica realized how much she could learn from her 4 year old boy - a boy who loved Jesus so much that he couldn't wait to see Him one day in Heaven. Edward was so little but his faith was so big.

And, in a show of how children can stir wonder and amazement, again for only a fleeting moment, Tom captured the following conversation, also at Jane's bedtime:

Tom - Will you be sad if Caroline goes straight to heaven?
Jane - Yes and No
T - Yes, because you'll miss her?
J - (head nod)
T - But why won't you be sad?
J - Because she'll with God, and they'll get our place in heaven ready for us.
T - Yes she will be there to meet us
J - And she'll work with God to make heaven bigger
T - Yes, she'll certainly make heaven bigger. Jane, I love you.
J - I know daddy,  and guess what else?
D - What?
J - I'm really excited that you have a basketball.  :-)

As we sat down to capture these stories, a bible verse jumped out at both of us: "unless you change and become like little children you will never enter the kingdom of Heaven" (Matthew 18:3).  Until now, we never fully understood that passage's true and full meaning.  We praise God for our children who, in these past few weeks, gave us this wisdom and understanding.  May all of us be blessed with this childlike faith.

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.

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.