Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

Goodness

On Saturday Jeremy and I attended a wonderful event presented by Marriages of Grace, a Northeast Ohio local non-profit organization devoted solely to promoting the sacrament of marriage and supporting the enrichment of marriages in the area. The event theme this year was “Marriage, Mercy, and the Martins” since this is the Year of Mercy as declared by Pope Francis, and Louis and Zelie Martin were recently canonized saints, a married couple canonized together. The Martins were the parents of Saint Therese of Lisieux, who you may have heard of.

We learned about the Martin family, and their story offers much to encourage any married couple in the pursuit of holiness. They each had wanted to join religious orders, but it didn’t work out. Later, they met by chance while walking around their town where they lived, fell in love, and were married. They had nine children all together, though four of them died during infancy. All the remaining children became nuns. The example of this holy family is inspiring to any family that wants to grow in holiness.

At the event, we also heard Philip Keller speak about crossing the line that most people don’t even know exists. The line between thinking like a human being, and thinking like God. The Martins crossed that line. They lived their lives according to what God willed; they made choices and decisions based on what is good and right, and benefiting to others above their own personal desires. We are all called to do the same. We are invited to turn our hearts over to God and accept his will to work through our lives. How do we know when we’ve crossed the line? Keller says you start to see little miracles everywhere–you see the hand of God where you would have missed it before. You start to notice communications that you sense are coming from the Holy Spirit. You become sensitive to when angels or the Holy Spirit are close to you, inviting you do this or that so that something greater can then take place. Keller’s talk was very inspiring for me. I want to be holy and I want to cross the line. I spoke to him at one of our breaks and asked him what I should do first to start crossing the line.

Here is where the story gets interesting. As he was talking to me, I realized that maybe I already have. He asked me if I experience some of the things he spoke about, and I said, sure, all the time. He told me I’m already across the line, but the real trick is to stay there. I didn’t tell you this before, but Philip Keller is legally blind, and has been for almost 20 years. He is closely involved in a miracle healing ministry, and I’m sure he himself has prayed many times for healing, yet he still cannot see. His faith inspires, despite his weakness, maybe because of his weakness. In any case, he was “looking” at me as we spoke and he told me “You radiate goodness.” Gosh. That is honestly the nicest thing anyone has ever said to me. It reminds me of an occasion about a year ago when a lady told me she could sense something about me that put me in tune with the spiritual, and when she learned about Agnes, she understood why that was. I just remembered that. Anyway, he told me “You radiate goodness.” So sweet, but also really powerful.

Radiate goodness. First, what does that mean? My first thought is saints are depicted with halos and that imagery must come from somewhere. Second, is this a temporary state that comes and goes, or do I have it all the time? I was feeling pretty holy at that Marriages of Grace event, but I don’t feel that inspired all the time. Do I radiate goodness when Stephen is being kind of irritating and I’m trying not to be snippy with him? Do I radiate goodness when I’m grocery shopping? Third, well great now I have a reputation to uphold. Thanks a lot Mr. Keller. Now I have to be a good person all the stinking time.

But seriously. The other keynote speaker at the marriage event–Jim Hogan, a high-school theology teacher–spoke about “free gifts,” and how even gifts come with a cost. The cost is prorated depending on how awesome the gift is. A pair of hand-knitted socks is pretty good, but you have to make room for their bulk in your drawer, and commit to special laundering so they don’t fall apart. A “free” vacation is really awesome! But you may have to pay your own airfare to get to the vacation, arrange for child care for your kids you leave behind, miss out on the family or social events you would have attended if you stayed at home. We are happy to pay that cost, because the gift is so good. Hogan went on to say eternal salvation is the most awesome gift there could ever be. The cost? Giving your life over to God and living a life of self-sacrifice and mindfulness of God’s will. We are happy to pay that cost, because come on. Eternal. Salvation.

Philip Keller’s remark to me is an awesome gift, but it comes with a cost, too. It would be really easy to feel puffed up and prideful (Sweet! Holy Blind Guy Thinks I Radiate Goodness!) but that cannot happen. I must remain humble. I am happy to pay the cost of humility, the cost of striving every day to stay on the “thinking like God” side of the line, the cost of being openly faithful and joyful in my faith despite my own weakness. It is a pretty hefty cost, fitting for such an awesome gift. I am willing to do it so that I can continue to be radiant with joy. Despite my weakness. Despite the trials. Despite the multitudinous opportunities in my life to practice humility and patience. I must need a lot of practice, because I get a lot of those opportunities.

Saint Baby Agnes, pray for me so that I may continue to live on the side of the line that puts me closer to the hearts of Jesus and Mary, closer to the promise that one day I may join them and you at the heavenly banquet.

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The Time is Ripe

Well.

It looks like my last post on this blog was almost two years ago. That’s an eternity on the internet. The truth is, I started this blog while pregnant with Agnes, and I wrote about life as a young, pregnant mother. Then I wrote about Agnes, and after she passed away, I lost my voice. What was I supposed to write about? I wanted to write about how life continues in a family after a child dies, how we learn to grieve and live with the loss, and find graces and meaning, and yadda yadda yadda. But I couldn’t write about any of that, because it was a struggle to process all the feelings for myself, much less for an audience. I made it about six or eight months after Agnes passed away before I gave up. I didn’t really decide to give up, but. You know.

So, two years passed. And here I am again. Jeremy and I did a huge thing earlier tonight. We stood up in front of a room full of 120 people and told our very personal story about Agnes. I admit, I cried during our talk. It was a scary talk to present. I’m really glad I wrote out my notes in complete, coherent sentences because I needed those things while I was speaking. We stood up and spoke from the heart about Agnes and how she changed our lives. I think this marks a turning point for us, and for me. It has only been two years, but we put in the work. We grieved hard core. We processed hard core. Those scars will always be marks in our souls, but we have a Saint Baby Agnes to pray for us, to help us continue healing, an ongoing event.

If anyone from that talk earlier tonight is here now, welcome. You can scroll down the page to the “tag cloud” and click whatever you want to read about.

I think the time is ripe now. I can start to find things to share again. I would like to find things to share. Thank you for visiting my blog, and I hope to speak with you again shortly.

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Baby Alice

Next week we were going to happily announce that a new baby Schwager is on the way. Instead, today I announce with sadness that our new baby Schwager has miscarried. We have named her Alice. She was very, very little when she died, so we decided to endow her with a female name since her actual gender was unknown. Alice is a family name on my father’s side, and I have always thought it was a very pretty name. Perfect for our new little baby saint.

We are very sad to lose yet another child; just to recap our baby survival rate right now is 25 percent. I don’t really want to be that family who is such an example, bearing trials with such grace. I don’t want to need all this grace we get from having three little baby saints in heaven praying for our particular needs and intentions. Why do we have to be purified so thoroughly here on earth? I would be happy to do it in purgatory if it meant I could keep my babies.

Since I have now had two miscarriages, my doctors and I will do some investigation to see if there is something medical that is causing me to lose pregnancies. On the one hand, I hope there is a medical reason, because it might be treatable and then I can have a successful pregnancy with a healthy baby. On the other hand, a medical reason for repeated miscarriages can potentially be serious. I don’t really want to come away from this investigation with a newly diagnosed disease.

So while we continue grieving our children, and investigating medical possibilities, we rely on their prayers.

Baby Joseph Mary, pray for us. Baby Agnes, pray for us. Baby Alice, pray for us.

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Close to a Turning Point

Today marks six months since Agnes joined the heavenly choirs. It is difficult to think about that time passing. On the one hand, it feels like we had her only last week, and on the other hand, it feels as if she has been gone for much longer. We think about her every day, and Stephen too. We recently uncovered a few blurry snapshots from Agnes’ time in the NICU at the bottom of a stack of papers in our desk. Stephen saw the pictures and said, “Ooooh! It’s Baby Ang-is!” We are trying to let Agnes show us how to live out her legacy.

It is on my mind that we are near to a turning point in our journey of life after Agnes. Next month she will have been gone for as long as she was alive. In September she will have been gone for longer than she was alive.

That is difficult to accept. We have become accustomed to coping as a family that recently lost a child. After she has been gone for longer than she has been alive, we will become a family that once lost a child. It will be a change we have to navigate, a change I am not looking forward to.

Our grief counseling has been going well up to now, and we plan to continue. We will be meeting our new counselor next week as our current one is leaving the facility to pursue another area of her field. We are learning to cope with trigger moments and redirect our attentions to help manage overwhelming emotions. We are making progress on the road to healing, but the road is not straight. Sometimes there are back tracks or loops, but we are on the way. The next few months will be telling, but hopefully we will be able to find our way through with the help of our support network, and the grace of God.

Baby Agnes, pray for us!

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The Holy Things for the Holy

343_vierge_orante_large iconDuring my days as a graduate theology/liturgy student, I had the pleasure to attend a lecture by a favorite scholar of mine, and she was talking about the different elements of the Roman Catholic Mass. Her position was that when the liturgy was reformed after Vatican II, they left a dis-jointed sequence of texts leading up to communion. Her biggest beef was with the acclamation, “Lord, I am not worthy that you should enter under my roof; only say the words and my soul shall be healed.” She didn’t like that we had this penitential prayer right before we receive communion. We are holy, she argued. We already did the breast-beating part earlier; we have witnessed the transformation of our gifts into the Body and Blood of Christ; we are now standing around his altar in praise and thanksgiving, why do we have to ruin the mood by harping on our sinfulness yet again? It’s redundant; it upsets the “flow” of the liturgy.

Now, at that particular time and place there were a number of liturgy scholars who saw the Eastern Rite as the more sophisticated and mature older sibling to the Roman Rite. These professors saw the poetry and mystery of the East and wanted some of that to imbue the rituals of the West. They loved the Roman Rite and wanted it to be the best it could be.

This scholar held a similar opinion. She had this example of “Lord, I am not worthy…” and for contrast she offered a line from the Divine Liturgy of St. John Chrysostom, the primary liturgical celebration for Byzantine (Eastern) churches. She stood at the podium facing the audience and said that, right before communion during Divine Liturgy, the priest holds up the Body and Blood and acclaims, “The holy things for the holy.” Then the scholar demonstrated the gesture with her hands up, and moving her imaginary vessels out towards the audience. It was a powerful moment. All of us in the audience made that “ohh/mmm” sound you hear during powerful moments among a crowd. The scholar’s point was, the priest is acknowledging the holiness of the assembled people, their worthiness to now receive the Precious Body and Blood. That’s all fine; that was a nice point to make and it certainly sold her argument. I can tell you I was sold on her argument.

But now, having attended the liturgy where this moment occurs, I can say she had it completely wrong. Totally wrong. If that scholar had ever attended the Divine Liturgy she would immediately notice that priest spends the entire time standing at the altar, facing the tabernacle, so his back is to the assembled people. When he does indeed hold up the Body and Blood and acclaim, “The holy things for the holy,” he gestures toward the tabernacle–toward God–who is holy and who is receiving the holy gifts we his servants are offering to him. The priest is speaking on behalf of the people, addressing God, and offering God the holy sacrifice of the Body and Blood. This is completely the opposite from the point that scholar was making many years ago.

The other piece of that long-ago scholar’s argument was that the penitential line, “Lord, I am not worthy…” is misplaced and doesn’t belong immediately before communion. She can have that opinion, but she needs to find another counter-argument because the Divine Liturgy only offers an even more extreme act of penance immediately before communion. Again, if she had ever attended Divine Liturgy, or even read a complete liturgical text before drafting her lecture, she would have known this. During Divine Liturgy, after the priest acclaims, “the holy things for the holy,” the people pray:

I believe, O Lord, and confess that You are truly Christ, the Son of the living God, Who came into the world to save sinners, of whom I am first. Accept me this day, O Son of God, as a partaker of Your mystical Supper. I will not tell the mystery to your enemies, nor will I give You a kiss as did Judas, but like the thief, I confess to You:
+ Remember me, O Lord, when You come into Your kingdom.
+ Remember me, O Master, when You come into Your kingdom.
+ Remember me, O Holy One, when You come into Your kingdom.
May the partaking of Your Holy Mysteries, O Lord, be unto me not for judgement or condemnation but for the healing of soul and body.
+ God, be merciful to me, a sinner.
+ God, cleanse me of my sins and have mercy on me.
+ I have sinned without number, forgive me, O Lord.

Then, in a suitably humble frame of awareness, we walk up and receive Eucharist. As an aside, I have noticed some members of my congregation actually beating their breast during those last three lines. The liturgy scholars would be horrified.

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Family Mission

First, it turns out this is my 200th post on the blog! Woohoo!

Jeremy and I were able to go on a mini retreat over the weekend. It was the annual Marriage Enrichment retreat put together by Marriages of Grace, a local organization founded by an ordinary married couple about seven or eight years ago. The retreat last weekend featured a couple keynote speakers, some smaller talks, time for each couple to be together to reflect on the content of the program, then Mass and a dinner. It was a great program and I encourage anyone in the Cleveland/Akron area to consider attending future events.

Anyway, the small talk Jeremy and I attended was all about dream building and setting personal dreams and family dreams, then figuring out what behaviors and habits are helping you to realize those dreams. That talk got us thinking about our family’s mission, which we have thought about before a few years ago. Then we forgot about it and never developed our ideas. The family mission is a great way to focus our energy and attention when it comes to philanthropy, supporting different organizations, even the activities we get involved in. For example, the couple who founded Marriages of Grace obviously support the sacrament of marriage as part of their mission. They focus a lot of energy and resources toward programs that build up married couples and help marriages flourish.

Jeremy and I thought of a few ideas. I really want hospitality to be part of our mission. I think it’s important for there to be snacks and coffee at a bible study. If you can have a lunch after a church meeting, you should. I would love to be able to spontaneously invite overnight guests to stay at our house. I want to have dinner company often, especially clergy and religious. We met the two Brothers of the Holy Spirit after Divine Liturgy on Sunday, and they confessed to us that they have started a new ministry: the ministry of eating! I want to support them in that by having them over for dinner!

Jeremy and I also want our family mission to include evangelization–Catholic in particular, and recruiting for Holy Ghost parish in particular. We love our parish family and we want the parish to succeed long term. I believe there are many people longing to experience the beauty and mystery of the Byzantine rite, but they don’t even know we are here and that they are welcome to come! It’s not widely known that Byzantine Catholic liturgies are open to Roman Catholics; Roman Catholics can receive sacraments because the Byzantine churches are in communion with Rome. They recognize the Pope as the head of the Church. The format of Divine Liturgy may seem foreign at first, compared to Mass, but it is actually similar. There is a series of petitions, then readings from scripture, then a homily, then Eucharist, then dismissal. We sing “Lord, have mercy” a lot, but other than that it is remarkably similar. I really like that Mary the Mother of God is mentioned so much in the Byzantine Liturgy. She is mentioned in nearly every long prayer the priest says, plus she gets a petition in all the litanies, plus there are at least two hymns for Mary sung during the liturgy. Roman Catholics may think they have Mary all to themselves, but I think the Byzantine liturgy texts mention her way more! So if you have a particular devotion to Mary, check out a Byzantine church!┬áMy personal, most favorite part about coming to church on Sunday is walking in amidst all the beautiful icons, gleaming gold in the lamplight, and inhaling the combined scents of incense and frying onions. It’s just perfect. It smells so holy and homey at the same time.

So, those are a couple ideas we have had about our family mission. I’m sure we will continue working out what God’s Plan is for our family. We continue to pray for inspiration and for the Holy Spirit to enlighten our minds and hearts.

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Grieving Agnes

Grieving for Agnes is a tricky business. For one thing, it is always tragic when a baby dies. We grieve her life but also the life she never got to live. For the second thing, we should be joyful because she is now in heaven in the arms of Mary and Jesus, and that is where we all desire to be and boy, isn’t Agnes lucky to have got there so soon. And for a final thing, now my family has a little saint whose main goal for all eternity is to intercede for us, her family, and help us to be peaceful and holy and ultimately she will help us get to heaven too so we can all be together. And that’s awesome.

But of course, I am still sad. Very sad. Not all the time, and don’t think I just walk around the house crying all the time, because I don’t. It’s more like all I want to do is lay on my bed and stare at the light on the ceiling. I don’t even want to sleep, I’m not sleepy. I certainly don’t want to do anything difficult like take a shower or reheat food for lunch. But I do these things because I have to. I don’t even really want to play with Stephen or give him a bath or sit and eat with him. I do play with him because he brings me joy, but I’m doing it only because I know that if I do, I will probably feel better. I have no drive to do these normal things, but I do them anyway out of obligation. So maybe that means I’m doing okay. I feel like I am doing okay, all things considered.

But I miss Agnes a lot. I regret that I didn’t make more of the time we had with her. I regret not holding her more. I regret that I left her in her crib when she was asleep because I didn’t want to disturb her. I regret cheerfully turning over her care to the night nurse every night she was home. I think about holding her in my arms, especially while she was dying and those are the times I cry.

It is true that Agnes is now in heaven, and she is already being venerated as Saint Baby Agnes by a few people. Isn’t that sweet? When I think about her spirit being with me and helping me to find peace, I do feel peaceful. She was definitely helping me and Jeremy on Wednesday and Thursday while we were at the calling hours and the funeral liturgy. I felt peaceful, and even a little joyful that Agnes is happy with Mary and Jesus and all the saints, hanging out with angels and enjoying a pain free existence. Her life on earth was so hard and I can’t imagine her discomfort every moment. Now she doesn’t have to endure that anymore, and I am happy about that and relieved for her sake.

So I know all these things and I can get through it pretty well when I talk with someone now about Agnes being a saint in heaven and she is “healthy” now, whatever that means for spiritual beings. But it will take a concentrated effort to keep on doing normal stuff. I can guarantee that I will still cry at apparently random times throughout the day for a while. My family can still use all your prayers, and now you can pray to Saint Baby Agnes to intercede on our behalf and to come to our aid.

Now Jeremy and I have two out of three children in heaven as our particular saints. [Most of you may not know that we had a miscarriage early in a pregnancy a few years ago. The baby between Stephen and Agnes]. We don’t know why we have to be so lucky; we wish we weren’t so lucky, but there it is.

Saint Baby Agnes, pray for us. Saint Baby Joseph Mary, pray for us. All you Angels and Saints, pray for us.

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Terminal Again

This time it’s real. This time we have been instructed to choose a time and a place before Agnes chooses it for us. This time the treatments they try don’t work. This time her condition declines and never fully recovers, so she loses something each time.

The doctor told us she talked with all the other ICU attendings over the last 48 hours, and they all agree there is nothing more they can do. The doctor told us we are talking in terms of hours or days Agnes has left. The doctor told us the several episodes of Agnes declining are her body telling us she is done.

Agnes is done.

Done.

Now it’s up to us to let her go. We can try to plan for it by preparing a specific time with the pain-killer medicines needed, all the people who we want to be around, for us to be ready and present and not in the bathroom or down in the cafeteria when Agnes leaves this earth. The longer we wait, the likelier it is Agnes will choose her time, and we might not be there, or our priest might not be able to make it in time, or Agnes might suffer more because the medicine she needs to be comfortable won’t be at her bedside.

So.

How do I announce the death of my child before it happens? Doesn’t that seem weird to anyone else? All I can say is, she will probably go before the weekend is over. We tried to explain to Stephen that the angels were coming to take Agnes to live with Mary and Jesus in heaven, but I’m not sure how much he absorbed. We’ll try again. It was good for us to think about the angels, too. Agnes has one foot out the door, and we’ll stay with her and watch until she leaves with the angels.

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Up in the Air

There is not too much to report on Agnes since a few days ago, other than her overall condition appears to be stable and slowly improving. Yesterday she did very well maintaining a body temperature without the hot air blanket or the medicine that assists with perfusion. She is also in process of weaning down the hard-hitting narcotic pain killers. She is also clear of the intestinal infection that caused some swelling and “free air” in her belly. Her lungs sound back to baseline for her, which is to say they are stiff and slightly diminished on the left side, but at least she’s back to “normal.” She is happy on her home ventilator.

But today they decided to try stimulating her guts by starting tube feeds at a very slow rate, and she didn’t like it. She spiked a temperature and some formula seeped back out to her stomach where it appeared in the suction tubing. I guess that’s the nice thing about Agnes’ G/J tube: you can feed her guts while leaving the stomach open to suction, which helps prevent throwing up. So Agnes demonstrated an intolerance to food, so they stopped feeding her. I’m not sure what the plan is for restarting.

Plus it is not clear whether her shunt is actually working or not. I do believe that it was functional at the time of the CT scan a few days ago. But in the meantime, the neurosurgeon tapped off some fluid and that procedure demonstrated a very high level of pressure in Agnes’ ventricles. Plus today she was very sleepy. So…I guess we’ll see on Monday what the next CT scan shows.

All in all, we are still in a grey area. Agnes did improve her condition since last week; she is like a new baby! We are grateful for that and happy that she didn’t die. But as we go on, it is not clear whether this recovery is lasting, or if she is on her way to a relapse. We are very conflicted about how to proceed here. We were sad she was dying, but also a bit relieved that she wouldn’t have to suffer anymore. Now that she got better, it feels as if we are traveling the same road again, the road of suffering. The fact that Agnes did recover is a miracle and the mid-week news that her shunt was working felt like another miracle. Those events happened and many people derived spiritual benefit and faith, and trust in God because of those events. Now we know that thousands of people are praying to saints and to God on behalf of Agnes and our family, which is amazing. Even if Agnes takes another turn for the worst this weekend, that extra week she was here brought boundless grace to thousands of people. Who knows what she will do from this point forward, but every day she is here is a gift and an opportunity to draw close to the Lord and experience grace.

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9 Lives?

So…Agnes is not dying anymore? Maybe? At least not soon? Maybe?

Agnes is very slowly crawling back from the edge of death. The doctors have been able to turn off a couple of the medicines, and reduce some of the ventilator support, and take off a lot of the fluid that had built up in Agnes’ body.

It seems as if Agnes is enjoying another of her many lives. Make no mistake: Agnes is still very very sick and it is entirely possible if not probable that she will not make it home this time. But, there is a hope that she will recover. There is a small chance now that she will become well enough to live at home again.

Since she seems to be on the mend, Jeremy and I have to start making decisions about her care again. We can’t ignore the shunt anymore. We already know it isn’t functioning, so we have decided to try again with the plan we developed before Agnes decided to have a near-death experience. The neurosurgeon will get a CT scan tomorrow morning and depending on what that shows, and depending on Agnes, she may go to surgery for a shunt revision Thursday or Friday. The neurosurgeon will lengthen the catheter in Agnes’ heart so hopefully it won’t pop out again. If it does, we will know without a doubt that a VA shunt is no good, and we will have to make some serious decisions. But, at least we will know for sure, having given the VA shunt every opportunity to work.

It is strange territory, where we are. On the one hand, we know Agnes has an underlying condition that is terminal. On the other hand, she does not appear to be more ill than she has at times in the past. What should we choose to do? Should we aggressively treat her, knowing that anything we do is merely a band aid? Should we leave her alone and keep her comfortable while her body fails at an unknown pace? This is really hard.

We still have a lot to decide, and the goal line is definitely shifting every day. That is really hard, too. For the present, we will address the urgent issues like her shunt and her respiratory status, and see what she does.

I know I’ve said it before, and I’ll say it again right now: MIRACLE. Agnes was more or less dead and now she is not. We have been given an opportunity that we don’t want to waste. It is clear that Agnes has more work to do on this earth. I can’t even believe the number of people who are praying for her and for our family. It must be thousands with friends and family, and friends of friends of friends… and all over the world, too. It is amazing that such a tiny, sick baby can inspire so many to seek God through prayer. Agnes is truly helping to save souls. Her suffering is bringing graces to thousands of people. That is a miracle, too. There are so many hearts united in her cause. How can we not believe in the power of prayer, with what we have seen in Agnes’ life?

Slowly recovering from near-death.

Slowly recovering from near-death.

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