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.