Evening Service: Traveling with our Gluten-free Pyx

It’s Sunday morning and we just decided to go to the evening contemporary mass. Since our parish does not offer an evening service we are trying to decide whether to go to Lady of the Lake or St. Ignatius. One is a contemplative service (which mom is voting for) and the other is a Life Teen mass (which Nate and Emily vote for).

I think I am out numbered.

We’ve come a long way. Years ago, when Nate was first receiving Eucharist, his low-gluten wafer was unique. Popping in to a new parish meant showing up early or calling a day in advance to explain the situation. Now, even if we have a visiting priest, we can arrive a quarter of an hour in advance, meet with the priest, and then slip into church for a quiet meditative moment before mass.

How does this conversation usually go? Now that Nate is 12, according to him, 12 years-8 months-and 12 days, we have been encouraging him to initiate the interaction. It still takes a bit of courage, occasional role playing, and then a “you-can-do-this” speech.

“Hello, Father. My name is Nate. I am gluten intolerant and I have brought my pyx with a low gluten wafer. I was hoping to have it consecrated at mass so I can receive both the body and blood.”

Either one of two things happens at this point, either the priest responds with a story of experience with low-gluten wafers, or the priest queries as he has never experienced this situation. As the years go by, fewer priests are unaware of the low-gluten wafers most of them now want to have an address of where to locate the wafers for other parishioners.

At this point, I usually get the elbow nudge. In a whispered panicked voice, Nate will cry, “MOM!” It’s my turn to step in. It’s a slow process to coach the communicant and educate the presider. As Nate grows in confidence, I am sure he will initiate more of the information when we visit new parishes, as it is now, I want Nate to feel welcome and excited about receiving eucharist.

Our home parish priest has set up a routine with Nate. No matter where we sit, Nate gets into line for Father, and then receives his low-gluten host from our pyx. (Prior to church, we laid the low-gluten wafer loaded pyx on the side table for the alter servers to deliver to the altar at the appointed time.) Quietly, the priest snaps the pyx closed and hands it back to Nate, who then pockets it and proceeds to the line waiting for the cup. This is Nate’s preferred mode of receiving. He feels like no one know he is different. No one singles him out from the rest.

Visiting a local parish when I was called to interpret for a special signed mass for the Deaf community, the priest made a big deal of walking down to Nate, giving him his host before anyone else received. All eyes were on Nate. From the front, looking down into the congregation, I saw Nate sink lower and lower into the pew. His face became a few shades redder, and his eyes darted up to mine with humility. After mass, Nate exclaimed in frustration that he was not old or invalid. He never wanted to receive eucharist that way, ever again.

When visiting a parish that the priest has experience with low-gluten hosts, we usually follow the tradition of this parish. Sometimes this means approaching the priest, receiving a blessing, circling the priest to take the pyx off the altar and proceeding to the cup. Other times, it is a matter of waiting until the very end, and going up as one of the last, so that the priest can step back to the altar and pick up the pyx for Nathan.

For either of our choices tonight, after a brief word with the priest, Nathan will be able to walk with our family, no matter where we sit, and receive Christ in the bread and the wine. It is an amazing blessing. I am thankful that we live in a time that congregations, priests, and a cloistered group of sisters understand the importance for everyone to be welcome to receive the sacrament of the Eucharist.

Bread of Life -- Thanksgiving for the Low-Gluten Wafers

Gluten-free bread has become the bread of our lives. We make it from scratch, we buy it in bulk to put in the freezer, we go out of our way to stores that carry our favorite brands, and somedays we just eat our least favorite brand to satisfy hunger.

The Eucharist is also our Bread of Life. This is an imagery that is so prevalent in our liturgy; it's in our scripture, our prayers, and in our music. Of all the music that we sing, John Foley's One Bread, One Body holds a special imagery for me.

One bread, one body, one Lord of all,

One cup of blessings which we bless.

And we, though many throughout the earth,

We are one body in this one Lord.

(John Foley, Oregon Catholic Press, Breaking Bread,

http://www.youtube.com/watch?v=EYlJC26-Ch0 )

This great table that we gather around, no matter where we live around the world; no matter what car we drive to arrive at mass, or whether we walk or bike; no matter if we are mothers, sons, fathers, or daughters; no matter if our skin is tan or beige or peach; no matter if we eat a wheat wafer or a low-gluten wafer, we are the body of Christ. We are One body.

What does that One Body look like beyond the table. There are divisions, just look in the fellowship hall; someone forgot to bring the promised gluten-free pasta for the Italian dinner, so Nate and the other celiac parishioners get salad and sauce. Gladys, with her diabetes, skips the desert, or at least only enjoys one forkful. Steve is avoiding the wine, as he has been battling with alcohol and even one glass can become addictive. The Ingalls family is vegetarian, so they bring their own veggie sauce. Baby David is not yet eating solids, so his dinner comes in the liquid form from behind a discrete blanket thrown over mom's shoulder.

Leaving the dinner, each of us goes home to find different foods in our cupboards. For some, it is rice and beans, others enjoy the meat & potatoes, and for another family, the cupboard looks bare until the food bank opens Monday evening. If we were truly One, I wonder if all of us would go to bed content.

It's a circle that we live. When we partake of the Body of Christ, we are to live more fully as the Body of Christ. As we live out that life, those around us are more fully blest, desire to find out our motivation, and seek to find Christ. They in turn, come to the table that gives life. It is simple acts that we model of Christ's that bring us closer and inspire us to return each week and live more holy lives.

Blessed Mother Teresa is quoted as to having said, that we are to find the poorest of the poor in our own communities to serve. We all don't need to leave our homes and travel to India to serve in order to live holy lives. The Body of Christ is around the world and in our own towns, and in our own parishes.

For our family this week, we will pack a bag for the food bank; packing it to provide for those that are the poorest in our own community. We will try to think of various members of the body of Christ and choose foods to support them; a bag of rice, a box of gluten-free cereal, potatoes from the garden, and something for babies that are just starting to eat.

It's bread that brings us life and energy to live. It's the Bread of Life that brings the Catholic Christian community together each week at the altar. It's the Bread of Life that moves within us to live in the example of Christ.

Each week, Nate is able to walk forward, reach out his heart to ask Jesus to lead his life, and receive in out stretched hands the body of Christ.

I am so thankful that we have low-gluten wafers that allows even more Catholics to gather around the altar. In one more way, we are all a part of the Body of Christ.

Where are the Pink-Frosted-Rainbow-Sprinkle-Donuts?

The Sunday following Nate's Celiac diagnosis, I realized we were going to need a new routine to our Sunday mornings. In the past, we would show up for choir rehearsal with Papa, and walk the gardens around St. Ignatius. An hour later we would head in for Mass, leave mid way for Children's Liturgy of the Word (C.L.O.W.), return to Mass, and then afterwards head over for the pink-frosted-rainbow-sprinkled-donut. Rick, my husband and Nate's papa, would take time packing up after choir and track us down in the community center amidst all of the other sugar high youth bouncing between the tables.

How do you tell, at three years of age, that what was the post-mass highlight was no longer in the diet? We were still trying to get across the "yucky-wheat" story and making connections to how his tummy felt sick and would soon feel better. Sitting in the community center amongst the gluten laden feast with no options was the equivalent to rubbing salt into a wound. For myself, personally, I loved the apple fritters, but I could do with out, and preferred to survive the morning minus the all-out temper-tantrum and hundred averted eyes that I predicted would occur if we could only look at pink-frosted-rainbow-sprinkle donuts.

About three years later, Nate suddenly asked about the pink-frosted-rainbow-sprinkle donuts, "What ever happened to them?". I had so successfully changed our family routine, Nate had forgotten the experience of the community room and donut feast. Our first couple weeks, we "remembered" an extra special treat that we had packed in the car. One week, having forgotten to get a special treat, we made a rare trip to the store on a Sunday. (I have a long standing tradition, since college days, of not shopping on Sundays in the hopes that my avoidance would allow others a day of rest.) There in the natural food section, we chose between dry cracker cookies and rice cakes with tamari flavoring. Not much of a "treat," but at least we were distracted.

Those early days were hard. My community of support was sitting on the long cafeteria benches often talking of the three "P's"; parenting, prayer, and pregnancies. I longed to join my friends and catch up on menu ideas, park trips, and how to live through the preschool years. My needs for community were as lean as my gluten-free dinner menu ideas.

Whether it was from sheer will or exhaustion, I had no tears to shed, yet I was quite sensitive to eating gluten items in front of Nate, or taking him to activities that were based around gluten food item. In those preschool years, I could not find any local sources for gluten-free donuts and just gave up the search. Fast forward to Nate's inquiry for the disappearing donuts, and I turned to the newly expanding internet to check out more national resources for donuts.

Typing a Google search, "gluten-free donuts," up popped Kinnikinnick. (www.kinnikinnick.com/) Double click on the website, and there appeared a Canadian gluten-free bread factory that featured six different varieties of donuts; maple frosted, chocolate glaze, vanilla glaze, plain, cinnamon sugar, an chocolate frosted. No pink-frosted-rainbow-sprinkle-donuts, but more gluten-free choices than I imagined possible.

But would these taste like sawdust? I ended up ordering one of each, plus bagels and pizza crusts. At this point, Nate was wanting to go to Coffee and Donuts because his Cub Scout buddies were all climbing on the chair racks and chasing each other around the hall. This sounded like the epitome of boyhood fun. The donuts arrived and we feasted. We opened all of them up, tasted each variety, declared them all good, and decided the cinnamon sugar were GREAT! Together we re-packaged the donuts into individual zip-lock baggies and froze them for the coming Sunday and succeeding weekends.

Flash-forward to Sunday, mass was complete, Nate came running up to ask if he could run with the other boys, AND could he take his donut to eat with his best friend Sebastian? It's one of those moments that I snapped with my magical memory camera . With all the hard heartache of what seemed to be constantly saying "no," this time I was able to offer a yes. Nate's beaming face, bright cheerful eyes, and appreciative grin are etched in my mind forever. Gone were the toddler-tantrums, he now understood about Celiac and being gluten-free.

Nate would have gladly gone to donuts and had nothing while playing tag around the benches, yet the socialization amongst our church friends was so much more enriched by a simple sugar donut.

Is there a Patron Saint of Celiac's?

"Hey Mom!  We're suppose to choose a saint for confirmation.  Sebastian's saint is known for being the saint of athletes." 

Sebastian is the natural athlete every child wishes to become.  A triple threat, football-basketball-baseball; the perfect all-around athlete that every athletic director waits for.  

"Wouldn't it be my luck if St. Charles Borromeo was the saint of stomach ailments?"

Nate's and his saint must have chosen each other.  Rick and I, the parents of Nate, chose Charles as his middle name in honor of Rick's father.  Our Catholic friend in Germany congratulated us upon Nate's birth and asked if we had chosen the middle name, Charles, to honor the patron saint of Nate's birth date.   We had no idea of the connection, to us, it was a family name.  Nate Charles was born on his feast day, so through the years we honored the three Charles on November 4th; grandfather, grandson, and patron Saint Charles Borromeo.

At the beginning of confirmation, Nate was undecided as to whether to formally take Charles as his patron saint, or to choose another saint.  His confirmation friends were all researching their saints, coming to class with patron saints of music, athletics, or specific virtues.  Nate's confirmation instructor believed the coincidence was divinely ordained and encouraged Nate to do a little research.  Little did any of us really know.

Who is Saint Charles Borromeo?  

Saint Charles Borromeo was a confessor, someone who died a natural death.  Born October 2nd, 1538, Charles was a lawyer and then appointed a cardinal of Milan.  He is well known for having spent his family's wealth building colleges, universities, and seminaries.  St. Charles was a key supporter of reconvening the council of Trent in 1562.  He was also a radical reformer of the clergy, and created the Confraternity of Christian doctrine for religious instruction of children.  During his life, St. Charles worked to alleviate the suffering of the poor and sick, even walking barefoot three times around the city in his cardinal's robes with a halter as a sacrifice while he offered the Sacraments to the dying.  St. Charles Borromeo died November 3-4th, 1584.   

 http://www.catholic-saints.info/patron-saints/saint-charles-borromeo.htm and http://www.scborromeo.org/scb.htm

When we came across the list of patron saints, Nate knew St. Charles was meant for him as

Saint Charles Borromeo is the patron saint of clergy, intellectuals, colic, stomach trouble and ulcers.  Maybe not listed specifically as the Saint of Celiac's, but Nate's earlier wonderings of patrons of stomach ailments was clearly more than intuition.  

So, all these years, we have had the perfect patron saint watching over Nate.  

Prayer of St. Charles Borromeo

Almighty God, you have generously made known to human beings 
the mysteries of your life through Jesus Christ your Son in the Holy Spirit.
Enlighten my mind to know these mysteries which your Church treasures and teaches.
Move my heart to love them and my will to live in accord with them.
Give me the ability to teach this Faith to others without pride, without ostentation, and without personal gain.
Let me realize that I am simply your instrument for bringing others
to the knowledge of the wonderful things you have done for all your creatures.
Help me to be faithful to this task that you have entrusted to me.
Amen.

Six Wishes for First Eucharist Preparation

Our First Eucharist Preparation year ended with a wonderful celebration mass with Fr. Adams.  The beginning of the year was not so smooth, and as other Catholic celiac families ask me for hints, I have started coming up with a wish-list of things I wish I had thought of before the preparation year and things for the special day.

1.  Welcoming first impression.  

My first suggestion for going through First Eucharist with a Celiac child, would be to start the year out with a simple home lesson to talk about the coming special year.  Nate and I had this conversation, but only after a mini incident at R.E. happened.  After years of making "wheat" the bad guy that makes you sick, we entered a year of banners of wheat shafts, loaves of bread, and much imagery of how special bread is to eat.  All of a sudden, Nathan wanted to be part of this incredibly delicious feast he was hearing about, yet his experiences with wheat were pain and discomfort.  What a mixed image and message.  

Each family addresses the gluten issue in different ways, often depending on the age of gluten-free onset.  For us, Nate was very young and had never really remembered the "wheat days."  Our chat was to focus away from the strong emphasis of the wheat and grapes, and to focus on the host and wine, or to examine Christ's Body and Blood lessons.  When all of the other kids made banners of wheat and grapes, Nate made pictures of the host and the chalice of wine. We were careful as I did not want to implant the idea that the wheat was being replaced, as Catholics we do not replace with rice or other grain wafers.

2. Snacks.  

I wish there was some way to know ahead of time when a parent was planning to surprise the class with birthday cupcakes or a special treat.  Nate is a good sport, but he too wishes to be part of the event, and a "special treat" from my purse is not exactly the same as a fluffy frosted cupcake with a magic ring stuck in the top.  I let the teachers and director know that we wanted to be aware of special food days, but I should have also let the parents know that I would bring replacement items, or provide a list of specific foods that would be acceptable for gluten free eaters.  

Short and simple gluten-free information and educational note:

  

"Nate is gluten intolerant (Celiac) and would love to be included in special food events.  Please call me at home, and I would be happy to bring equivalent foods.  If you wish to bring gluten-free items here are a few suggestions:

   Any fruit and vegetables.  

Glutano or Pamela cookies found in the Health Food section at our local grocery stores.  

Ice cream is a great gluten-free addition to your special cake.  Ice cream cups or Umqua, Breyers, Tillamook Brand of vanilla ice cream are gluten-free.  (Ice cream cakes don't work as they usually have cake and ice cream touching.)

Thank you so much for helping to include Nathan in your special event."  

3.  Priest.  

Our local parish priest was not interested in celebrating with a low-gluten host; he had never heard of such a thing.  I brought in the paper from the American Bishops and he still was not convinced that this was approved.  The priest from our second parish, the parish I work at, was very familiar and willing.  Nathan ended up having his retreat with these children and receiving his First Eucharist with Fr. Adams at a different parish than our own.  It was the day that was special, Eucharist was the focus; the group pictures and friends were not the center of our day. Our god-parents and extended family came with us to help make this a really special Christ-filled day.

4.  Retreat Day.  

I wish that there was some way for the kids to make a simple version of wine at the retreat as well as the little loaves of bread.  Surely, there is a wine making kit!  Our Religious Education director does a wonderful job talking about how bread was made at the time of the Last Supper, how we make bread today, where the ingredients are found in nature (sugar could come from honey/bees etc.), and where we can find them in modern stores.  Being an educator, I love to make things hands-on for my students.  Nate is a great sport, he willingly watched from the side, but to do it over, I would search out this additional activity.

5.  Instruction

I wish that one of the teachers had been a bit more careful when telling the class, "If you don't eat the host, you are going to die, and never live again."  (John 6) Granted, I know what she meant spiritually, but for a young celiac child, her lesson was taken very literal and immediate.  In Nate's mind, if he doesn't eat the host, he might not make it to his next birthday, to Cub Scouts, to Christmas, to the baseball season.  Much of our music and liturgy is focused on "Eating the Bread of Life."  Yet for a child with celiac, eating the regular host, is not physically life-giving, but life-draining.  

With a little explanation, or use of some of the other scripture references in the gospels, the emphasis can be on "eating the Body, becoming alive in Christ, life everlasting with spiritual communion."  It has become important for us to express how receiving the Blood of Christ from the cup, is equal and as valid when received alone or when received with the low-gluten wafer.  On those Sundays or situations when the host is not available, Nate use to express how he didn't feel it was complete.  During his Eucharist preparation year, I never talked about situations when he could not receive his low gluten host, such as when no wine was present in a communion service or situations when the wine runs out.  Since then, I have tried sharing situations when non-celiacs receive spiritual communion when they are unable to receive Eucharist (ie. communicable illness, one of the elements runs out, parent with screaming child pacing the breezeway, a person avoiding alcohol, or a homebound Catholic listening to mass on the radio).

6.  The reception.  

I wish I had the gift of making a pretty cake, or knew of a cake store for gluten free specialty cakes.  Nate did enjoy the fruit platter, the fruit punch, and the cookies we brought along for the event.  There are just enough times in life that he watches from the side or substitutes with a gluten-free alternative that this could have been one of those opportunities to bless the event with something special and similar to everyone else's.

 For Nate's recent confirmation, I did make a round two tiered cake (from a gluten free mix) with frosting.  Younger sister, Emily, and I wrote a special message for him with a cake decorating tool that she had received at Christmas.  (Finally, someone in our family will know how to frost a cake!)

Having gone through this so intimately with a family member, I really have a desire to make the  lessons and experiences accessible.  These suggestions are a few that I continue to offer to our parish and to other families going through this special year.  

May these bless another child and help to create a truly holy and wonderful celebration mass.