Life's Unfair: The teen years of growing-up Celiac

I hate being Celiac!  It’s not fair!  I am the only one in the whole world that is cursed!

Nate is melodramatic.  Slightly.  Well, slightly, on his good days.  Very literal, logical, academic, and very melodramatic, that’s our Nate.  As the parent-child teacher once told me, Nate is all emotion and energy.  

Life is not fair.  From the Old Testament, we know Job had his troubles.  But no pre-teen wants to hear about Job losing his house, wife, and kids.  Showing up at youth group and finding out there is a surprise pizza party, and no one thought to about a gluten free pizza; some nights that’s the end of the world for Nate.  Spending a half hour making a new cookie recipe, only to taste it and realize that sand has a better consistency; that’s worthy of declaring that Nate’s dying of hunger.

Everyone has their cross to bear.  Most of the time we can’t see what each other carries.  I’ve been gently talking Nate through the emotional melt downs through the years, and we have often ended up with a litany of how unfair life has been to others, the crosses that others bear that we can only barely see.   

• Nate’s cousin Francis had open heart surgery as a toddler, huge cross for her early life.  As a toddler, she was not growing.  Although the two were the same age, Francis, was nearly six inches smaller.

 • Nate’s best friend, Sebastian, has exercise induced asthma, and he is a star athlete for all the CYO sports, plans to go to the big Catholic high school and on to college with a scholarship.  Yet, he can’t run four blocks without his inhaler.

• Steven’s father has been seriously ill, started back to work and the economy crashed.  There is no money for anything extra, and won’t be for years to come.  Steven is a very accomplished pianist at the age of thirteen, and the family cannot afford a piano.  Daily, Steven walks to his church to practice.

• Edward's mom died when he was six.  Edward and Nate studied ballet together for several years.  At the funeral, Edward came up to Nate and said, “I am so sad, I don’t think I will ever dance again.”

•  Grandma has cancer and is also Celiac.  Grandma was not following her gluten free diet, and during her initial tests for cancer, her liver function levels were completely off.  Upon discussion with the doctor, she had to admit that she was not being careful, which had caused the body to react.

•  Nate’s little sister seems to have nothing ever go wrong for her.  (Well, except that she is allergic to seafood, milk, pork, cats . . . )

And then there is my litany.

• Gluten free foods are so much more expensive.

• Why won’t the soup supper cooks bring in the list of ingredients.  I keep asking and every week, I have no idea what is in the soups.  I get tired of bringing our own food to every church parish community event.

• I get so tired of restocking our gluten free emergency box.  

• It takes so much time cooking two versions of the same recipee when family and friends are over.  Why won’t they just eat our gluten free foods.

• It is hard to say, “Sorry Nate, you can’t eat this either.”

I know that it is really hard to feel different everyday.  To Nate, there are times when it feels like he is being singled out or picked on, everyday and everywhere we go.  The closest comparison we have been able to talk through, has been friends with diabetes.  Like Celiac, everything seems to revolve around food; ingredients, food labels, getting enough food, eating a right balance of food, finding enough food when traveling or away from home, teaching others about the foods Nate can eat.  

Talking to these other moms, it is hard not to say, “Get over it, get on with life!”  And, it is only when dropping the mask that we can really say how scared we too were before the diagnosis.  How frustrating it can be.  How green the grass looks for everyone else. 

At the same time, often when supporting each other, there reaches a point when thanksgiving starts to come forward.  

•  I am really thankful we had an early diagnosis.

•  I am really thankful for how supportive my entire family has been for family gatherings and meals by remembering to call or by bringing a surprise treat.

•  I really appreciate the youth group leaders and their willingness to learn and include us in the meal choices.

•  We have been blessed to have several grocery stores that carry lots of choices of gluten free foods.

•  I am so thankful that my husband appreciates the extra work that it takes for food preparation and he teaches Nate to be grateful.  

•  I am so thankful that Nate lives in a time that he can receive a low-gluten host.

I know there are days that Nate would really like to wake up and go through the day, not thinking about his gluten free diet.  My attitude can influence Nate’s feelings about being celiac; I am an example and his support during his frustrating moments.  And, although  I don’t live a life any bit like Job’s, by reading through his book, I can find support in looking for the places to be thankful rather than bitter.

Feast Day of St. Charles Borromeo, November 4th (reprint)

"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.

PIZZA (Gluten Free): The staple diet of every youth group.

By now I should know that I don't even need to ask a Catholic youth group what they want to eat at a youth group function.  There is always and only one answer, "PIZZA!".  Every youth group that I have been involved in has the same menu, just a different source. 

Some like the fast, phone-in order pizzas from Pizza Hut or Godfathers.  Other groups enjoy baking their own from the local take-and-bake chain, Papa Murphy.  One group just wanted to pick up grocery store pre-made pizzas to pop in the oven.  The type varies slightly, but usually we have the cheese-only crowd, the pepperoni-only group, a veggie lover's crew, and gotta-have-lots-a-meat team.

We've entered our second year of youth group with Nate.  The first year I was busy with other events on our parish campus; daughter Emily had her own activities in the school building, only twenty yards from the youth room.  This year, Nate is going to be on his own for the 90 minutes of youth group as Emily's group is meeting on another night of the week.  Nate's diet is becoming more and more his own monitoring; less and less am I informed in advance about special pizza nights or pot-luck snack events.

I've had a year to prepare for this new independence and time to ask friends in other churches for suggestions.  One friend just doesn't allow their teenage child out of sight for any such events and has given strict rules to never eat anything unless the parent has verified the gluten-free purity of the food.  In short, unless it comes from their kitchen, the teen is never allowed any other foods.  This is a bit too strict for our family.  Our goal is to encourage Nate to be responsible for all food that enters his body, whether we are present or not.  This has been a gradual increase of independence.  In their strict regimented diet, I am concerned about it becoming the battle point in some late-teen or early adulthood rebellion.

On the other extreme, not a healthy one, another friend just allows her celiac child to eat whatever is present, "One day a week of forbidden foods will help keep him on the diet for the other six days.".  This is not a healthy option for Nate, as with gluten foods he stopped growing and Nate really hopes to pass his dad in height.  Philosophically this approach does not match our belief, Nate is still learning to make choices in the midst of his peers and under peer pressure.  We want him, in many different scenarios, to make the statement that he will choose what is best for his body, mind, and soul, even if it is different from the group.  Practicing this with something familiar to him, like gluten-free foods, is just a small rehearsal for the big issues that will come along in the future.

For the earlier years of Religious Education, we kept a box of gluten-free snacks for "emergency" snack raids.  A surprise special birthday celebration for a classmate would bring thick-frosted-gooey cupcakes to class; out comes Nate's special gluten-free snack box for a chocolate treat.  The solution for us in youth group has been to create a freezer box of a couple gluten-free pizzas and a quick microwaveable meal.  (Special treats!  We make everything from scratch at home, so things in cardboard that just need heating seem like the royal treatment.)

Nate knows how to read labels for chips and candy; and he makes great choices, keeping a good balance of sugars, carbs, and proteins.  There seems to be a regular appearance of popcorn at youth group nights, something that Nate knows to gravitate towards.  However, occasionally something different comes, a nacho dip, corn dog dippers, sub-sandwiches, or cheese and crackers.  It's on these nights that Nate has the hardest time.  He's hungry, the choices are limited or non existent.  A once-and-a-while fasting until he reaches home is tolerable, but a regular weekly fast from the community gathering around the snack table seems to be a sentence for starvation for a young male teenager.

Personally, I feel that being celiac should not be a trial of deprivation.   Others need to know that we want to be aware of special event; we would like to bring fresh gluten-free pizza or gluten-free cookies. Nate's does not need to regularly go without,  but neither do I need to become the gluten-free martyr, "It is SUCH  a hassle to bring gluten-free foods.  Why doesn't anyone ever remember to bring gluten-free foods?  Nate is special and should get first choice through the line before the gluten-free foods are gone."

I have to admit, that even though I do not voice these complaints aloud at the event, I have felt them and in a private moment gripped to close friends and my husband.  My voice has whined.  I have groaned as walked into a youth group meeting to see pizza boxes ready to be served.  I have counted to ten, knowing that a positive comment to encourage advanced warning would make it easier for me to provide options for Nate.  Nate is the first in a long string of celiac kids, coming through the parish.  The need for gluten-free options is not going to disappear after Nate graduates.  Maybe I am just the forerunner and carving the path for the families to follow.  My attitude and time invested to share, will make it easier for the others coming up in another year.  My attitude will make it easier for the other parents when they make requests.

The youth group leader at our parish has been really wonderful.  She tries to remember to give me a schedule of special food events.  She has a place for Nate's special snacks.  On a recent pizza feed, she ordered pizza from a more expensive source so that everyone had pizza from the same boxes.  Food is a common place for all communities to gather, teenagers are no exception.  It is her extra effort that allows Nate to belong and not to feel like the outsider.  

Being a Catholic Youth Group, the center of their lives is Christ and the center of the Mass is the Eucharist.  Being able to gather around the snack table and not feel excluded may not seem significant to an adult, but to a teenager, partaking and enjoying pizza (gluten and gluten-free) with friends means you belong, you are in communion with your friends.  For Nate, being able to gather with his friends at the altar and share in the Lord's Supper, with a low-gluten wafer, is a moment to be part of the Body of Christ, to belong to the Catholic community.