June 2017/Audrey's 8th Birthday Recap

I know I've been trying to get away from doing the monthly recaps, but I can justify this one because I think it'll be pretty short and easy.  

(Sidenote:  If you missed it, I already covered a lot of the activity of last month in these in-depth posts:  Triathlon #3 - June 3, 2017 in Greenville, Trip to Boston, and Triathlon #4 - June 17, 2017 in Callaway Gardens.)

So between all of that, what else did we possibly have time for?!  

Well the biggest thing of course was that Audrey turned 8!  That morning before David left for work we gave her her birthday present from us:  a new desk and chair for her bedroom, complete with stationary supplies.  She adored it and immediately began organizing her rubber bands and new pink accessories, just as I knew she would.   

She got to plan out the day from start to finish, so after I tore her away from her new desk, we began at Kids Up (where I think she and Luke quickly realized they are now too old for Kids Up. Sad.)  Afterward we stopped by Jilly's Cupcakery to pick out her birthday cupcake and then came home for lunch and rest.  That afternoon we went back out to Queen of Hearts (a big antique store that she loves to roam around in) and the mall, where David met us for some shopping and dinner.  She chose a dress from Gymboree and hairbands and stick-on earrings from Claire's.  Per her request, we searched fruitlessly for a tankini bathing suit that looked appropriate and finally gave up and rode the merry-go-round.  She chose Tin Lizzy's restaurant for dinner, but obviously refused to let us tell them it was her special day, so there was no embarrassing singing.  David drove the kids home in the van while I went by the Dollar Tree to grab the last few favors for her birthday party.  I walked in the door around 7:25 and by 7:29 (the time of her birth), we were singing to her and enjoying our cupcakes. It was a simple but really fun day that was full of both "she's getting so old" moments (choosing shopping at the mall as your birthday activity?!) but also a feeling of "she's still firmly planted in kid world, thank the Lord" (you want to ride the merry-go-round? Of course!)

We celebrated with family and friends at her "Cartwheels and Cupcakes"-themed birthday party that Saturday held at her gymnastics gym.  She had about 14 friends (mostly friends plus their little brothers!) and they spent an hour on the floor doing an obstacle course, bar work, and rope swinging. Afterward we went into the party room where they got to decorate their own cupcakes and pose for pictures with photo booth props.  Audrey decided to open her presents there and it was a flurry of wrapping paper and ribbon.  Before we knew it, it was time to pack up and head home.  The only consolation was that my mom came back and stayed the night with us so she could start her "shift" for mine and David's trip to Boston the next morning.  We had pizza and then watched Little Big Shots before turning in.  

Other highlights of the month included a week of gymnastics camp for the kids, a few playdates, some trips to the pool, a splash pad gathering with our small group buddies, visits to the library, a couple of dentist appointments, a trip to the dollar movies to see Trolls, Father's day celebration meals, and a girls' night in for our small group.  Our church also broke ground on their new campus, which means our days of meeting in a nearby high school are numbered.  We're excited, but since we're not the ones getting up at 4:30am every Sunday to get there for set-up, it's not quite as big of a deal to us!

So I guess we did find time to squeeze in a few other things in June after all!  It was a really good month with a bunch of summertime adventures, but I do hope we get a little more taste of the lazy side of the season next month.  Pictures will be up on Facebook soon, so check them out there.

June Recap/Trip to New Smyrna Beach/Audrey's 7th Birthday

So sorry I've been MIA for almost a month.  It's been a whirlwind of a summer thus far.  We went straight from school letting out to the beach, from the beach to Audrey's birthday and party, from the party to prepping for carpet installation, from the carpet installation to 4th of July festivities.  I'm ready for those proverbial "lazy summer days!"

In order to not spend hours writing this update, I'm going to bullet point the month's highlights:

• Luke took swim lessons and did pretty well.  I feel like sometimes he pushed back on what the coach was asking him to do and the coach let him off the hook too easily.  Still, he got more comfortable in the water and learned some good basics and survival skills, which is great.  

• Audrey started soccer through a local program called i9 Sports.  I love their template of one game a week with practice right before the game.  They also have a short season of only six weeks.  It's a great way to introduce kids to organized sports and the subsequent lessons without overcommitting your entire family for months on end.  I'll do a lengthier update on how she did in next month's recap.

•  Our church campus hosted a small group leader cookout for us.  It was great to catch up and meet others as well as hear the support and excitement from our campus's leadership.  As one of them said, "Take a minute and look around you.  In a few years, we'll look back on these humble beginnings as the 'good ol' days.'"

• We took our annual trip to New Smyrna Beach with David's mom's side of the family the third week of the month.  We did it all:  David played golf, he and I had a date, we had a date with each kid separately, we attempted a crab hunt (it was way too buggy to stay out long!), I read and blogged, we ate flitters galore (and just food in general galore, too), the kids got to reel in some fish that David's cousin and uncle caught, we played cards, and we did Go Karts with the kids for the first time.  Of course, we also swam swam swam and the kids even "rode waves" a couple of times (it was super calm.) I managed to get in all my tri workouts thanks to a local gym and a great YMCA I found, which let me chill the heck out about my fear of losing ground.  We also celebrated Audrey turning seven a little early with a pizza party, craft time that she led for the girls, and a walk on the beach.  Unfortunately, as is par for the course for our trips down there, someone ended up sick.  AJ got terrible heat rash towards the end of the week and we kept her indoors for a full day to let it recede a little.  It looked awful, but we kept hydrocortisone on it and Benadryl in her as needed and it slowly went away.  Other than that, it was a fantastic week that went by too fast...more so than any previous trip down there that I can remember!  

• David had a good, quiet Father's Day.  We had just gotten in from NSB the night before, so they all slept in while I did my brick workout and then we went on a hike by the Chattahoochee River.  We gave him some golf accessories and took him out to dinner that night.  He sort of gets robbed with AJ's birthday falling right around the same time, but he's a good sport about it.  

• AJ's 7th birthday was great.  She wanted to eat from her favorite deli for lunch, so we got a picnic to go and went down to our neighborhood pool to swim and play.  That afternoon David came home early and we sent her on a scavenger hunt to find her present from us:  a Barbie Dream House!  In a "she's getting too old too fast and the window is closing" panic, we decided to splurge this year.  She was ecstatic!  When I took her to Toys R Us a few weeks early to get some ideas for presents, she walked past the dream house in a box, looked at me, and said "Well.  I know there's NO WAY."  I kept catching her sneaking back and checking it out.  It was a total full circle moment for me when she saw it, as that was by far one of my favorite childhood toys.  I even cleaned up a few of my old Barbies to give her with it, though I made sure she knew there was no pressure to keep any of them.  We played with it for the rest of the afternoon, setting up everything just so.  We ate her dinner choice of nachos and then had cupcakes from Jilly's on the back deck and sang to her right at 7:29 (the time she was born.)  It was a great day celebrating our amazing girl!

• AJ's "Mermaid Splash Birthday Bash" was the following Sunday evening at Bogan Aquatic Center.  That's right...her very first not at home.  (Well, her first birthday was at her grandparents' house, but this was the first that I didn't put on from scratch at a home.)  She had SO much fun swimming and playing with her friends and cousins.  She went around and around the lazy river and played on the little water playground they have.  They giggled and squealed for an hour and a half before we pulled them out to do cake and ice cream.  She told me on the way home that it "exceeded all of her dreams."  Score!  Plus, it was a breeze to put on since I did very minimal decorations (foam mermaid centerpieces she put together, balloons, pics of her at the beach/pool through the years, a GF mermaid cake from Sally's Bakery, and a paper banner)  and didn't have to plan a meal, craft, or game.  I also didn't spend days cleaning and setting up before and after.  I could get used to that!  

• As I mentioned, we finally got the carpet replaced.  I say finally because I originally got some quotes at the end of spring 2015.  After realizing how much it would cost to do it, we waited until the spring of this year.  But March/April was all about the deck and May is no time to deal with anything extra...hence June 2016.  It was a TON of work to get everything cleared off the furniture and packed away.  China cabinet, bookcases, dresser tops, underneath the beds...everything had to be put away.  And of course I couldn't miss the opportunity to do a little purging and organizing as I was doing it, which just took longer.  Since we had the entire upstairs and main level carpet replaced, that pretty much left the sunroom, basement, and bathrooms to pile stuff in.  The crew arrived early on the 30th and worked like crazy.  As they would finish a room, I would go in a vacuum so they could put the furniture back.  The new carpet was so much thicker that I actually hurt my shoulder pushing the vacuum on it! (I think David doubted me until I made him try it out in the hall.  We ordered a new vacuum on Amazon the very next day.)  It was a long, exhausting day, but the new stuff looks great and I'm very pleased with the color and how soft it is.  I completely underestimated the dust and post-installation clean-up required over the next week.  It took forever to get it out of every nook, cranny, and blind.  So to sum it up:  Lot of work.  Love the result.  But basically we're moving before we need carpet replaced again.  

I realize I did not give a resolution update in May, so here's a doubled-up version:  I'm staying on top of social stuff with at least two dates with David and a dinner with a girlfriend a month.  We also had two small group gatherings this month - one with our co-leaders at the cookout and one with the ladies for a girls' night.  I got to see my brother and niece twice this month when they stayed with us.  We also visited with David's grandmother and aunt while she was in town.  And obviously there was a full week with David's extended family in New Smyrna.  So, outside of blogging, I'm doing pretty well on the social goals.  BUT, I have completely dropped the ball on the service projects as we did not do birthday boxes or the neighborhood clean-up.  Ugg.  Realizing that as I write this will hopefully help to get my rear in gear.  For organization goals, I've done pretty well.  I did the dining room, garage, and most of the craft room and kitchen this quarter.  I still need to tackle the office, but in my defense, I also did both kids' rooms again this past month in preparation for the carpet.  (It is a CONSTANT battle to not drown in toys and art projects around here.)  As usual, doing well in some areas, need improvement in others.   

To close, some good quotes from the kids:

• AJ, after David told her that "they say" most everyone dreams every night but that they don't always remember it:  "Daddy.  You should trust the person that experienced it and not what you read on the internet."  TRUTH, girl.  

• Luke:  "Did that fire truck turn his 'whee-ers' off?"  (He meant sirens!)

• AJ, after telling her she probably wouldn't get any wisdom teeth:  "Oh no!  Does that mean I won't have any wisdom in my mouth?!

I know I squeezed  a lot into this one update and I'm sorry it wasn't more detailed (or maybe "you're welcome" is more apt!)  I just knew I needed to get it done or I'd lapse into a procrastinating absence for several months.  Hope your summer is going well and here's to a few lazy days in the latter half!

Life's Not Fair (A Dramatic First Grade Tale)

On Tuesday I was on my way to pick up Luke from preschool when the clinic at Audrey's school called.  The nurse said that Audrey had come into the clinic crying with a stomachache and would not eat lunch.  I told her I was going to grab Luke and would be right over.  As I hurried to get him checked out, I had that helpless "both children need me and I am failing one of them" feeling.  I haven't had it in a long while, but it caused immediate flashbacks to Luke's newborn days when he would be screaming to eat while I was in the middle of putting Audrey to bed.  It's an awful, panicky feeling and I hadn't missed it at all.  

As we got in the van, I prayed she would feel peace (and not puke in public and be scarred for life).  Luke urged me to go "top speed" and then scolded me when I commented on something on the side of the road:  "Mommy!  Please pay attention to what you are doing!  If you drive off the road and break our engine, we cannot get to Audrey!"  Oh boy.  

I walked in the clinic and she seemed okay.  In fact, she seemed pretty good.  Since it was already 1pm though, I went ahead and checked her out and we came home (after Luke made sure she climbed in the van without bumping her belly.)  At first I thought she’d just accidentally had gluten, but the more I prodded the more I suspected something else was going on.  I got Luke down for nap and went back into her room to talk to her.  When I explained that sometimes our stomachs hurt when something has upset us, she burst into tears, hugged her knees to her chest, and kept repeating "I don't want to get into any more trouble, Mommy!"  

Well.  This just got interesting.  

I pulled her into my lap and she told me what happened.  She had a substitute that day that has a reputation for being strict.  Apparently Audrey and two of her little friends had asked to go to the bathroom right before recess.  Audrey wasn’t listening and didn’t hear when the sub told them to meet back in the classroom.  When they were finished, they walked down to the playground (something I know that her regular teacher allows.)  When they realized the class wasn’t there yet, they started to head back up ("Honest, Mama!  We did right away!"), but ran into the class on the way.  The substitute was upset and laid into them.  She made the girls walk two laps, give her $6 of their Boardwalk Bucks (fake money they're earning to spend at their Boardwalk Bizarre at the end of the month.  Audrey only had $10 total), and told them that they also might miss recess the next day.  

Ouch.

This was a harsh punishment for sure.  Tears stung in my own eyes but I didn't let her see.  We're talking about a kid that has never gotten into trouble at school.  EVER.  Not in two years of preschool and two years in elementary.  Not even a "move your name to yellow" warning.  Now let me acknowledge that she is not perfect by any means.  She just saves the sass and misbehavior for home.  But when it comes to teachers, she would rather have a limb amputated than to disappoint or disobey them.  

I realized I had a decision to make.  I could say what I wanted to (something along the lines of "WHAT?!  That's ridiculous.  That is way too harsh!  Doesn't she know you would never disobey on purpose?  What's her deal?!")  I could be indignant and fire off an ugly email to her teacher.  But something made me pause and think before I responded (thank you, Lord.)    This seemingly little problem suddenly felt like a huge opportunity for a lesson on responsibility and accountability.

I explained how part of a teacher's job is to keep everyone accounted for and safe and that, though it was an honest mistake, that it was Audrey’s fault for not listening to directions.  She nodded through her tears.  I told her, even though we may not think it fair, the substitute had the right to dish out that punishment.  I said that the consequences would stand, but that she would not get into any additional trouble with her Daddy and me.  I suggested that she write a letter of apology to the substitute and a letter of apology and explanation to her teacher and ask for a way to earn back her dollars.  She calmed down and we worked on the letters together.  

She nervously packed the envelopes in her folder and had a hard time going to sleep that night.  I tucked a "I'm your biggest fan" note in her lunchbox the next morning and pumped her up with encouragement and prayer as she headed to school.  Finally, after a long day of anxiously wondering how it went, I headed to the bus stop.  When she got off the bus, she was grinning.  She said that her sub was still there but that when she'd given her the note, the sub thanked her and said she could go to recess that day.  Audrey also informed me that she earned $4 in Boardwalk Bucks (an unprecedented one day record!  Hmm...perhaps I detect a little remorse on the sub's part?)  

So, in conclusion, everything seems to be back to normal in the first grade world of drama.  But y'all?  Parenting as kids get older is no joke, man.  You're not just keeping them alive, you're shaping their character.  You have to balance showing them that you're in their corner without them feeling like that's a blank check to act as they wish when they wish.  Sometimes that feels next to impossible.  

As a friend reminded me, it's like our pastor says:  "You're raising adults that you'd want to be friends with one day."  And I'd want to be friends with someone who owns her mistakes, even the honest ones.  Even the ones that result in too-harsh consequences, like giving up six hard-earned pretend dollars.  Because one day the stakes are going to be higher.  

I pray she always feels comfortable coming to me and that I can help her figure out how to handle her problems.  However, I will not be the parent that demands life be "fair" to my child.  Because it isn't.  But life IS a lot easier when we listen well and understand each other clearly.  And I bet she remembers that next time.  

A Year with Celiac

This time a year ago was when we got the call that we'd suspected was coming...Audrey's endoscopy results confirmed that she has Celiac Disease.  (To read the long version of the diagnosis, click here.)  A year into this, I wanted to write out some thoughts about how the past 365 days have been for us.

Before I dive in, let me preface this post by stating that I know there are so many worse things out there that people are enduring with their children.  Every day my Facebook newsfeed is filled with heartbreaking pictures and pleas for prayers and donations on behalf of kids battling cancer, cystic fibrosis, and other horrific diseases.  Even some close friends of ours have to deal with worse food allergies and the fear of anaphylactic shock, which I can only imagine must be constantly terrifying.  It is a huge dose of perspective and believe me when I acknowledge that I know how good we have it.  That disclaimer aside, though, Celiac Disease is not nothing and I do get to have some feelings about it.

My overwhelming emotion is gratitude.  When I reread my post from last year, tears came to my eyes as I realized how far we have come.  I remember feeling so depressed and overwhelmed at the enormity of what we were facing.  And yet, God has been so faithful to help us through all of the adjustments and heal the damage that had been done to her little body.  He even blessed her with a precious friend in her class that is also gluten-free, which has been such a gift in helping her feel she isn't alone.  

Truly, the Lord has helped us adjust to everything in a way I doubted was even possible a year ago.  Just as other parents in similar situations promised, her being gluten free really has become normal to us. I am so proud of what an AMAZING job Audrey does handling her restrictions.  She never whines or complains and is very matter-of-fact about her diet, which is a big help.  She's even developed a taste for many gluten-free items that she hated in the beginning, which is honestly both happy and sad to me ("You're right, honey, that cardboard cookie DOES taste delicious!")

Shopping for, cooking, and ordering gluten-free food has become second nature to me.  I can read a list of ingredients in record speed and determine whether it's safe for her or not.  For those things I'm still unsure about, I have a handy app that scans the barcode and can usually clarify.  I've become well-versed in the menus of area restaurants and know how to spot true allergy-friendly places vs. clueless fad followers.  

Still, I have to be honest about the slight undercurrent of frustration and worry that has also become second (third?) nature to me.  It has gotten so much better, but I don't know that it will ever truly dissipate as long as I'm the primary cook for Audrey...and probably long after, really.

My frustration stems from several things.  Dealing with people for whom this is a fad diet and, admittedly undeservingly, sometimes those people that are so ignorant, is definitely at the top of the list of annoyances.  I was in their shoes a year ago, so I do try to be empathetic, but sometimes being the educator wears on me.  Questions like "So she can't have ANY gluten?" (Nope) or "But isn't that just in bread or pasta?" (No, it's in a ton of stuff including things you would never imagine, like some medicines and sports drinks) do get old.  We have to use a different toaster, different condiment jars, and different wooden spoons to avoid cross-contamination.  It's checking every party treat bag, holiday goodie, and teacher reward that's offered.  Trips take on a new level of preplanning and research.  It consumes every thought about every meal and every snack of every day.  It permeates our lives.  And some people think "gluten-free" just means buying a different kind of bread.  And OH my word, the expense!  Slapping a gluten-free label on it automatically means you get to cut the amount in half while doubling the price.  

The biggest day-to-day struggle, though, is the lack of convenience that comes with a restrictive diet.  I confess that sometimes I still get irritated with the extra work.  I've had to tell myself that that's okay...that you can still be very accepting and used to something but be frustrated by it (see also: laundry, carpool, taxes, etc...) With the new gluten-free hype, there are many more options available to us than there used to be for people with Celiac.  I cannot imagine doing this five or ten years ago!  But of course we do not have all of the options that someone without Celiac has.  For example, I have to pack Audrey's lunch for school every day.  She rarely bought it before, but now it's not a choice at all.  Though her school does offer a gluten-free lunch option of the salad bar, like most six year olds, she will not eat that.  It doesn't matter if our week is slammed or I'm sick or I just run out of time...I have to pack her lunch or she doesn't eat.  And then I double, triple check every day when she gets out of the van at carpool that she grabbed her lunchbox.  I've coached her that if she does leave it and I don't notice, she can always eat a piece of fruit or her emergency snack until I can bring something to her.  And while we have about six to eight tried and true restaurants to choose from, that's a far cry from the dozens and dozens of options that everyone else gets.  Not that we did fast food often, but now I can't ask David to drive-thru anywhere but Chick-fil-A on the way home.  Even though I love me some "Christian chicken", I wouldn't mind Wendy's now and then.  And of course every meal she eats out runs the risk of her getting "glutened."  

The other emotion that has become an old friend in this diagnosis is worry.  It's not necessarily constant and it's rarely overwhelming anymore, but it's often nagging in the back of my mind.  Will she sense my frustration?  Am I somehow silently conveying this burden to her?  What if I forget to check a label and make her sick?  Is that tummy-ache normal or did she somehow eat some gluten?  Does she feel different or left out?  (Like that time she came home and the whole class had a treat but the lunch lady couldn't find her special ice cream bars so she didn't get anything.  She was completely fine with it, but I was furious.) Will her check-up prove that we've been doing everything the way we should?  Can I trust that this parent or teacher truly understands?  Will she be sad about the Valentine's/Halloween/birthday goodie bag candy that she can't have?  And, the biggest and worst questions:  what permanent damage was done and what awful things could this bring about down the road? 

So that's an honest look at where we are a year in.  We're a thousand times better than we were (and, again, infinitely better than others facing way worse diagnoses) but we're never going to be completely rid of the frustration and worry that came knocking at our door a year ago.   It ebbs and flows, but we will never be totally free of it.  I pray we'll have some viable options for a cure in the future but that even if we don't, that this will be something God uses to make Audrey more special and amazing than ever.  

Thank you for walking this past year with us.  For every prayer you said, every recipe you shared, every product you recommended, and every time you made sure she had safe choices at a party or meal, we are truly grateful.  

"And we know that God causes all things to work together for good to those that love God, to those that are called according to His purpose."  Romans 8:28

Update:  I realized after I posted that I probably came off as a total jerk for admitting my frustration with ignorance.  I am always happy to educate and answer questions from anyone willing to ask and learn! It's just become such a fad diet that there are a lot of uneducated "experts".  It works in our favor with the amount of new choices in stores, but against us when people assume it's a preference and don't disclose ingredients or handle food properly.

On the Sunny Side of Celiac

I was feeling a little guilty about how Debbie Downer my last post was and decided it would be a good exercise for me to write out some of the positive things about our recent Celiac news.  I can hear a friend telling me right now, "Just FEEL what you're feeling, for pete's sake"...bless her heart, that was such a freeing concept when I needed it most.  And, don't get me wrong, I've not come to terms with this just yet.  I just need a little optimism to carry me through right now.

So as I face throwing out/donating this pile this week (not pictured: nearly the entire contents of our freezer plus the kids' medicine cabinet)...

...I'm going to choose to look on the bright side:  

1)  We discovered it early.  Though it feels frustratingly late to me, statistics show that most diagnoses of Celiac Disease don't come until adulthood...with millions going undiagnosed forever.  We caught this early enough that she'll never really remember anything different.  I'll be able to raise her with the knowledge of how to shop for and cook GF stuff and it'll just be a way of life for her. Five years old is a way better age to deal with this than during the already-tumultuous teenage years.  

2)  Since we're committed to doing this as family and David and I will be 95% GF at home (we saved some cereals and the like that the kids don't eat anyway), this will mean healthier eating for all of us.  Just about everything I've bought that's gluten-free is also organic and contains wonderfully good-for-you ingredients.  There's going to be less processed junk filling us up and there's going to be less eating out.  All changes for the better!

3)  There are so many choices out there.  When we first found out, I was completely overwhelmed about the foods this meant AJ would have to give up.  Turns out, there are GF options available for just about everything.  Now, finding ones that taste good is going to be a longer process, but there are plenty of choices to try.  We've actually turned it into a game by rating things and are trying to have fun with it!

4)  We are not alone.  Audrey has several friends with allergies and is familiar with the concept of having to stay away from certain foods.  This will help her feel less ostracized and alone and give us a bunch of resources to pull from as we figure this out. 

5)  Audrey will feel better.  She is already perfect to us, but the inside of her little body is battling against itself and, however mild her GI symptoms are, this will improve them and make her life better on the whole.  

No promises that tomorrow's post won't be "5 Ways Going Gluten-Free Has Ruined Our Lives Forever", but for now, we're feeling okay.  Thanks again for your continued prayers and support!

Celiac Disease

As promised in an earlier post, I'm ready to share some news we recently got about Audrey.  We've told our immediate families, our small group, and a handful of close friends, but this is the official public statement (doesn't that just sound like we are straight royalty out of Buckingham Palace?!)  Here ya go: 

The short version:  Audrey has Celiac Disease.

The long, long version (go ahead and take a potty break and refill your coffee):

Back in the fall, I was talking to the mom of a girl in Audrey's class who had recently been diagnosed with Celiac Disease.  Several of the things she mentioned stood out to me and the conversation stuck around in my brain long after it was over.  For weeks I replayed the symptoms her daughter had exhibited and recognized them as traits I'd been concerned about at one time or another in my own child:  very short stature without such in David and I, distended belly, yellow teeth, mood swings, fatigue, and some milder GI symptoms that I'll spare you details about.  They weren't much by themselves, but together they seemed like a concerning package.  I kept brushing it off, even scheduling and then canceling an appointment with a GI doctor at one point.  

The holidays came and went, but as things calmed down, I just could not shake it.  I told myself I was being a hypochondriac and that, if anyone had an illness, it was me.  I was developing that Munchhausens Disease they always talked about on House where someone makes up fake illnesses and symptoms for themselves or a loved one.  Finally, I decided it wasn't worth the stress and we'd go get a simple blood test to rule it out.  If it was negative, which of course it most likely was because I was just a worrywart, then only David would have to know.  Well, and his mom, who had to keep Luke.  I may have even fabricated something to her (read: lied) about the dentist raising a concern just to keep my crazy in a can, as if nearly fifteen years of knowing me hasn't already exposed every ounce of my insanity.  (SO SORRY.)  

So, off to the doc we went.  We told Audrey we were just going for some allergy testing, which she's familiar with from friends' and family members' experiences.  I brought along a post-it note of jotted-down symptoms and also the iPad with headphones as back-up because no child, especially a little girl, needs to hear her parent raise concerns about how short she is or how big her belly is.  She blissfully played a game while I talked through what I was seeing with the nurse and then the doctor. (By the way, why do they always do that?  If I tell the nurse everything and then she types it all into the computer, why do I then have to reiterate it all to the doctor when he comes in?  Are they checking my story?  The nail was in the rear right tire, Mr. Principal...)  

Anyway, the doctor was very nice and took the time to hear me out without making me feel like an idiot, which is always a tally in the pro column.  He agreed that by itself each "symptom" wasn't much, but together they were cause for concern.  He ordered a blood test and we left from there to go get one done while I already had her out of school and Luke taken care of.  She cried in my lap while the nurse drew the blood, but she handled it all pretty well and we headed to school in time for my volunteer shift with her class.  

The appointment was on a Wednesday and results typically take about a week.  Cue the wait and worry and prayer and wait. On Monday, my phone rang and the nurse who introduced herself immediately apologized and told me the results were positive for Celiac Disease.  Let's pause now for a definition (insert Zack Morris time-out music):

Celiac disease is a genetically linked autoimmune disorder that can affect both children and adults. In people with celiac disease, eating certain types of grain-based products sets off an immune mediated response that causes measurable damage to the small intestine. This, in turn, interferes with the small intestine’s ability to absorb nutrients in food, leading to malnutrition and a variety of other complications. The offending amino acid sequences are collectively called “gluten” and are found in wheat, barley, rye, and to a lesser extent, oats.  There is no cure for celiac, but following a strict gluten-free diet can help manage symptoms and promote intestinal healing.  

My heart sank as I listened to her explain their findings.  They look at something called a TTG level.  A normal, non-celiac level is five or less.  Audrey's was 125.

125.

That's not borderline.  That's not kinda-sorta grey area.  That's freakin' off the charts.  I was shocked.  

I tried to take in what else she was telling me.  The gist was that they wouldn't diagnose it by blood test alone.  They would have to do an endoscopic biopsy for which she'd have to undergo general anesthesia.  It would offer a complete diagnosis and also assess the level of damage that had been done.  The office would call me to schedule it in the next 48 hours and it would happen in the next two to four weeks.  

I got off the phone and hollered out of the room to David (who was taking the day off since AJ was out of school and he'd traveled so much lately) to start a show for the kids.  He knew what that meant and quickly got them settled.  When he walked into the room a few minutes later, he found a sobbing heap of mess waiting for him.  I repeated everything the nurse said through ugly, hot tears and hiccups.  I knew this was not the end of the world, but it was a big deal to us in that moment.  A great big deal.  Not only were we freaking out about the stuff in front of us, but we'd already read enough to know that people with Celiacs are at greater risk for developing a whole host of other autoimmune disorders down the line including Crohn's, MS, intestinal cancers, diabetes, and a myriad of other nasty things.  Not to mention that the likeliness that Luke had it as well was very high.  This was about more than some dang wheat.  

We got through the rest of that afternoon and evening, each sneaking away for a minute or two with our phones or computers to start looking up as much information on Celiacs as we could.  After we tucked them in, we talked and read and researched for hours.  We prayed and tried to reassure each other that it was going to be fine.  We finally decided to try and wind down with a show, but a sleet and ice storm had moved in and the flickering power made it difficult.  David eventually tried to get some rest and I took my Bible downstairs to the cold sunroom and cranked up the heat.  It was time for God and I to hash some things out.

I prayed and cried and read Psalms for a long time that night.  It made no sense to me, this stupid thing.  This stupid thing that could turn into far worse, stupider things later.  Hadn't He heard me begging for the test to be negative as I prayed over her night after night while she slept?  For that matter, every prayer I've ever uttered for that child and every wish I've ever made has been for her health.  Why didn't He do what I knew He was capable of doing?

I pitched a holy fit the likes of which will remain between me and my heavenly Father, but He heard me and He met me where I was because that's Who He is and that's what He does.  Even in my confusion and anger, I felt His peace.  I am still not settled on why my precious five year old has to endure this lot.  What purpose does this serve?  How will this bring Him glory?  Can't we strengthen her (and, frankly, my) character and faith some other way?  I may never understand this side of heaven, but "when you can't see His hand, trust His heart."  And I do.  I don't like it, I don't want to...but I do.

We muddled through the next few days and busied ourselves with preparations for Luke's party.  The doctor's office called and scheduled the endoscopy and gave us instructions. Soon after, I called my sweet friend Holly Watson, whose husband David performed our wedding ceremony a decade ago.  She is a pediatric nurse practitioner who has come to my rescue countless times during this parenting gig.  I knew I was taking a shot in the dark to ask her if she'd heard of the doctor, but I called anyway.  You can imagine how I felt when she replied, "Oh I love him!"  Thank you, Lord.  I so needed to hear that stamp of approval and her words of reassurance.

The Monday after Luke's birthday weekend was hard.  I almost felt a physical suppression as I unwillingly got out of bed that morning.  The distraction of the birthday was over and my teeny hope that the test was wrong was slipping away and being replaced by near-certainty of a positive diagnosis.  I felt pretty sure that I looking ahead to a painfully long season of adjustments and work.  God put the words of a lady I once attended small group with into my head:  "Just do the next right thing."  So, I took Audrey to school and then Luke and I hit the gym.  I worked out and we ran some errands and dropped off a surprise at a friend's house.  

Side note that maybe I'll turn into a whole post one day...When you're going through something, I've learned five great coping mechanisms:  

1) Get into God's Word 

2) Pray without ceasing 

3) Do the next right thing 

4) Do something small for yourself  

5) Do something small for someone else 

This became my way of dealing as we ticked down the days until the endoscopy.  The thing about having two young kids is that you never have to do much waiting around.  Somehow you manage to stay pretty busy whether you want to or not.  I very much wanted to, so it worked out just fine.

"Suddenly", the weekend before the procedure arrived.  David really wanted us to do something extra fun and special that weekend, so he got us tickets to see the circus.  The kids loved it, of course, and even though I wasn't thrilled with the expense (hello Disney World one month ago), I really couldn't be upset since his heart was in the right place...even if clowns are involved.  (If we just met, you should know I'm not a fan.)  We enjoyed The Greatest Show on Earth and then went to eat the greatest tacos on earth at Tin Lizzy's...trying not to think about how that was yet another place that we'd have to cross off our diet-friendly restaurant list.  

That night I got to meet my dear friend Kara who was in town and her sweet sister Meghan for coffee, which was so good for my soul.  They listened with open hearts and offered words of wisdom and encouragement like only other moms who know Jesus can.  Meghan is a physician's assistant and has a daughter with some medical issues, so she was able to speak to both the medical and the parenting side of things in a unique way.  We closed up the coffee shop and I left feeling tired, but better prepared to face the next couple of days.  

David and I had agreed to wait and tell Audrey about the endoscopy that Sunday to help ease the length of the anxiety we knew she would feel.  We sat her down that afternoon and gave her a very brief overview of the next day's procedure.  We tried to give her just enough detail to answer her questions without overwhelming her.  We explained that the blood test she'd taken didn't give us all the answers we needed, so the doctor was going to put her to sleep with some medicine and take some pictures of her belly from the inside.  It would be quick and painless and we'd be there as soon as she woke up.  

She took it better than we expected and was mainly stoked about missing school the next day without having to make it up.  She was very bummed about not getting to spend the night at her grandparents' house like Luke was getting to, but we offered her some two-on-one time with us instead of going to small group and she jumped at the opportunity.  I'd found a nearby indoor pool and thought that would be the perfect distraction and also serve to wear her out so she wouldn't lay awake worrying that night.  The three of us took off to do that and then grabbed dinner afterward at her choice of Applebee's.  Her stomach hurt so badly by dinner (I think it was a combination of swallowing air and pool water plus waiting too long to eat  but, ugg, who knows...), that she didn't eat much and we headed home for bath.  She had a snack before bed and was feeling better as we tucked her in.  She fell right to sleep without any trouble, thank the Lord.  

The alarm went off at 4:30am for David and I the next morning.  We got ready, prayed together, and then woke up AJ around 5:30am.  We'd decided not to mention she couldn't have breakfast or drink unless she asked, but she never brought it up.  We loaded her into her car seat still in her pajamas and made our way to the doctor's office.  We had a little trouble finding it, seeing as how the address of the location wasn't actually the name of the road it was on (c'mon, man!) but thankfully we got there with time to spare.  

We didn't have to wait long before we were called back.  The nurses were awesome and I fell in love with the no-nonsense-but-friendly anesthesiologist immediately.  (I liked her so much that I almost asked her for her number so we could be friends afterward because she was that cool, but I thought that would be a little strange.)  Audrey was content to watch a show on the iPad while we went through paperwork and information.  The doctor came by and talked with us about the procedure again and we signed more scary documents. Before we knew it, we kissed her goodbye and were ushered back to the waiting room for the most excruciatingly slow 15 minutes of our lives.  Seriously, I aged an entire decade in that fifteen minutes.  Finally, the doctor opened the door smiling and we exhaled for what must have been the first time all morning.  It had gone very smoothly.  Thank you, Lord.  

He ushered us back into a little sitting area and showed us some pictures he'd taken with the scope during the procedure.  My hope momentarily rose as he showed us the clean esophagus and a little beyond it.  However, when we got to the stomach picture, he pointed out the dreaded scalloped edges.  Even with my very untrained eyes, I knew things didn't look like they should.  He told us he was 99.9% sure it was Celiac without even having to get the results back.  We'd get a call with confirmation by the end of the week, but there wasn't any question in his mind.  He kindly tried to encourage us and told us that this was very treatable and manageable, even reiterating what he'd said earlier about fully expecting there to be a pill that could fix this in the next decade or two.  That didn't do much for us in that very moment, but I appreciated his effort.

After a few more minutes, the nurse came to take us back to Audrey who was waking up.  I have never in my life seen David's walking pace that quick as he took what must have been three steps to get to her bedside a hundred feet away.  She looked tiny in that big bed, but she groggily grinned and tried to sit up.  We let her sip some juice while she uncharacteristically chatted and the nurse took the IV line out.  She laid there about twenty more minutes before we got her dressed and were able to carry her to the van for the drive home.  

Once back at the house, we spent the rest of the day lying around watching TV, playing games, and reading.  She ate cheese toast and tomato soup of lunch - more things we'll have to find gluten-free options for (the doc wanted her on a normal diet until he got the results.  His words were actually "have a gluten party for the next three nights...it won't hurt her for that little bit longer.")  By mid-afternoon, she was getting hard to keep contained, so we changed clothes and she and David strolled by the lake while I took a short run in the neighborhood.  The weather was amazing and I needed the stress relief so badly that I actually felt my body relax as I pounded the pavement.  

We met David's parents for dinner that night and, still blissfully unaware of the dietary restrictions coming her way, Audrey had worked her appetite up to hamburger status and enjoyed every bite.  We got home and put the kids to bed and David did some work while I got ready for bed and then caught up on some family phone calls.  He came in our room and whispered that the Kirkleys (our co-small group leaders and neighbors) were swinging by to drop some stuff off.  I thought they must be doing a little balloon and card for Audrey and didn't think much else about it until I walked into the kitchen a half hour later to discover 4-5 bags of gluten-free groceries.  Their daughter has a wheat allergy among many others, so they had gone by the store and picked up a bunch of her favorite gluten-free foods and some flowers for Audrey.  I promptly started tearing up because I realized how much people love us and that we are not alone in this.  I called Kelly and thanked her profusely for their kindness (not to mention spending their weekly budget on us because gluten-free is EXPENSIVE).  We chatted a little bit and she offered to meet me at the store later in the week to give me a lesson on gluten-free shopping.  Please and thank you!

So, later that week, David's mom came over to watch Luke while I met Kelly at the grocery store for a lesson on gluten-free shopping.  Going up and down the aisles, we read ingredients and labels like crazy and discussed everything from holiday celebrations to cooking times to birthday parties.  It was so, so wonderful to have someone to empathize and lend their expertise.  After we finished, she went back to work from home and I headed off to a nearby Walmart that she said had a lot of options and spent another hour there pouring over everything.  I drove back to the house just before lunch with my head about to explode, but feeling the teeniest bit more capable.  

The next couple of days began to wear on me as time went on without a call from the doctor.  Hope is a funny thing, and even though I had mostly wrapped my brain around an official diagnosis, the teeniest part of me thought "well...maybe..." and that part got harder to deal with the longer we had to wait.  Of course there was another part of me that was thinking, "Oh no.  Maybe it's something else...something worse...and he's not calling because he has to schedule time for us to come in to break the news to us."  The torturous games our minds can play are a blast, aren't they?!  

By Friday morning I couldn't take it any more and I called the doctor's office and left a voicemail for his nurse.  It went something like, "Hi.  I know this message is completely futile, but I'm gonna try anyway.  Please oh please oh please oh please don't let us go into the weekend without results.  Oh pleeeeese."  (I took a page out of Luke's Book of Begging and unashamedly used his best lines.)  

Thank the Lord the doctor called me back around 1:30pm that afternoon.  Unfortunately, he confirmed what I was expecting and that little .01% ray of hope was gone.  It is Celiac Disease.  He said that her villi showed a "moderate to severe level of damage" and that we should begin a 100% gluten free diet immediately.  I asked a few questions, namely whether weaning her off gluten over the course of a week would be okay (yes) and what would happen if she got "gluttened" after coming off of it (it could vary from a little tummy ache to vomiting, but damage would be done to her villi regardless so we needed to make things as "clean as possible" meaning minimize the exposure from cross-contaimination.) He assured me that the body would heal itself over the course of about six months, though, and symptoms would slowly dissipate.  I don't know what this means for more permanent symptoms we're seeing, such as short stature (will she have a growth spurt?), but we'll find that out later. We chatted a little more and he said he'd be in touch to line up a consultation with himself and the dietician in the next few weeks.  I also asked him to go ahead and put in a blood work order for Luke so that we could get testing for him underway before we began going gluten-free.  

He had his nurse fax it to David's office and long story short (fax to scanner to email to printer + David's insane work day = not an easy piece of paper to come by), we were sitting in a Labcorp by 4pm.  I was so over all of these diagnostic processes and the accompanying waiting that I was not messing around.  Luke was nervous going down there, but handled the actual test like a boss and didn't even whimper. It may have had something to do with the fact that I wised up this go-round and had my phone playing a scene from Frozen for him to watch.  The techs taking the blood had a hard time finding the vein and just as I was about to rip it out and do it myself (ya know, with all my formal phlebotomist training), they found the money shot and got the vial they needed.  Audrey was actually a little upset that he didn't cry because she had during hers a few weeks earlier.  ("How can he not be crying?! He's three!  I'm five!")  We high-tailed it out of there, went by the the grocery store, picked up a pizza, and came home for Friday night pizza pajama picnic. I may or may not have almost shed a tear over the realization that it would be our last one from our favorite pizza place because they don't have any gluten-free options.  

After we'd eaten and Audrey had watched a show, we started another one for Luke and asked her to come into the sunroom with David and me to talk.  We had waited as long as we could and knew it was time to tell her so we could be open and honest about the changes we were making.  We knew she was intelligent and mature enough to be told the truth and needed to know so she could speak up for herself at school, church, and friends' houses when we weren't there to do so for her.  Of course, we didn't want to overwhelm or scare her and tried to walk that line carefully.  We were very intentional about saying "Celiac" and not "Celiac Disease" to her as well as making sure we communicated it was something she has, not something she is (i.e. NOT saying she is  "a Celiac.")

It actually went very well, which I shouldn't haven been surprise about because a) people were praying for us and b) Audrey is a rock star.  My sister-in-law had sent me an incredible kid's book that did all of the hard work for us.  Since Audrey's love language is reading, we were able to tell her ourselves, but then let the book answer all of the difficult-to-explain details and kid questions.  We also shared how her sweet friend Michelle had brought over some of her favorite foods and how her friends and cousins had been praying for her for the last few weeks.  Afterward, she asked about a few things and then closed with "Can I go watch the show now...and will you start it over from the beginning since I didn't get to see that part?"  Sure, honey.

So there you have it.  Audrey has Celiac Disease.  Luke is currently being tested.  David and I will also get blood tests in the coming weeks just to be sure.  

It's not what we planned and it's not going to be easy.  But, like I wrote earlier, I trust God.  I trust that He has her best interest at heart.  And we're trying to keep perspective.  This is nothing compared to the serious medical issues millions of people face every day.  It could be so much worse.  We know this and are grateful we caught it at all and that it isn't super serious.  

Of course, all of that doesn't mean I don't still have feelings about the situation.  They have gotten a lot more manageable in the last couple of weeks (see paragraph above about the holy fit), but oh, do I have me some feelings.  Pick one:

Worry - what if she gets something worse because of this?  What if Luke has it too?  How many more tests and doctor's appointments is this going to mean for her/him?

Guilt - why the heck has it taken us five and half YEARS to get this figured out?  At the very least, why didn't I listen to the nudges I felt in the fall?  How long has she felt the effects of this?  Has she always felt awful and just doesn't know any different?  What kind of permanent damage has been done?  Her tummy, her height, her teeth...what is irreversibly negatively effected?

Selfishness - this is going to make shopping and cooking even more of a nightmarish chore than it already is.  Oh, the changes and adjustments that we're going to have to make are going to be HUGE.  And as the family's shopper and cook, the burden is 99% on me.  Plus, the expense for the GF items is enormous, too!  And will we get to eat out anymore?  At least, at anywhere worth eating and without having panic attacks?  

Anger - we have gone to every doctor and dentist check-up she was supposed to have since she was born.  Why didn't anyone notice anything?  

Defensiveness - what if people think this is just the latest diet-craze for us?  What if they think we're hippy new-age weirdos who are just jumping on the bandwagon?

and, ultimately,

Sadness - I don't want this for her.  It's going to be challenging and burdensome and unfair and...just dang hard.  FOREVER.  All the doctor's offices and tests and the way she'll feel when she gets "gluttoned" are going to be so rough.  She's going to stand out when she wants to blend in and that's crazy difficult.  What about the family recipes I won't get to pass along?  What about all of the holidays when she can't enjoy our traditional favorites?  At the very least, every class celebration, every birthday party, every sleepover, every date with a significant other is now affected.  At the very most, much more is at stake should she get another auto-immune disorder down the line.  This is the emotion that crushes me.  And to think both of my babies may be in this boat...I just get overwhelmed.  At a friend's wise words, I'm trying not to pre-grieve these things before we see if she even does, but it's really hard not to do so on her behalf.

The degree of all of these emotions ebb and flow as does my stress management.  I think I'm doing okay with handling everything, but my body sometimes says otherwise.  My stomach fluctuates between fine and aching a dozen times a day, my skin looks like a fifteen year old's with all the break-outs, and my emotional eating is causing me to take on weight like a sinking ship takes on water. (I count it one of the great injustices of my LIFE that I am not one of those people that loses weight when I'm stressed out.)  Still, I've come a very, very long way in the last couple of weeks and it will get better.  IT WILL GET BETTER.  As hard as it is to believe right now, this will become second nature to us and we will hit a new normal in a few...months?  

One thing I can say for sure is how unbelievably grateful we are for all of the love and kindness that friends and family have shown us since this all began.  From mailing us books to buying us groceries to care packages for the kids to texting and calling, we have felt the support.  And the prayers - oh the prayers that have been bending God's ears lately on our behalf!  Thank you, thank you, thank you.  You've made a tough road much easier to walk and I know that support will continue to strengthen us as we navigate our way through this. Please keep up those prayers and we'll be in touch.  Maybe we can break some gluten-free bread together soon...

In the meantime, here are some resources I'd love for you to check out if you want to find out more:

1)  What is Celiac Disease (This whole website is a good, trusted source)

2)  Celiac Disease:  10 Things Everyone Should Know

3) Celiac FAQs


"I will praise the Lord, who counsels me; even at night my heart instructs me.  I have set the Lord always before me.  Because He is at my right hand, I will not be shaken."  
 - Psalm 16:7-8