Father's Day 2013

We spent Father's Day over at my parent's house after attending their Ward earlier to here my sister speak.  I got some of my favorite pictures in recent memory while we were there . . . 

These two especially . . . 

I also got some cute pictures of Greg and the kids, then of all of us. 

And then a bunch with Grandpa Robert and the kids. 
Cousin Bailey was down for a nap at the time, unfortunately, so it's not all the grandkids, but it was all of mine.  Even if Ellie was ridiculously uncooperative :-)

And a couple of Isaac and me . . . 

And some of the kids with the coconut whipped cream, which was a big hit . . .

And the kids especially had fun with Uncle Cody.

 Owen and Daddy

 

And lastly, just to get it in there, a picture of my three oldest with Aunt Talina and Grandma at the town parade the day before . . . 

And I'm ridiculously behind on facebook updates on the blog:

May 23rd

Today was the big day at Greg's work -- layoffs. Fortunately, Greg came home with a job. (Yay!) Although a new one -- his position was dissolved under the new structuring at the plant, but he was moved to a new department. This is such a relief and we're feeling so fortunate -- and our hearts go out to Greg's friends and coworkers who were not as lucky. This is such a tough time for everyone at Kennecott.

May 24th

I think I'm starting to get the hang of gluten free breakfast foods . . . 

 

May 27th
Memorial Day 2013

Had a fun Memorial Day at Grandma Karine's and Grandpa Robert's house, with Uncle Cody, Aunt Star, Aunt Talina and Uncle David. We had good food -- and the kids' Aunts made a valiant effort to create a gluten free meal, and got SO close The stuff is sneaky! But they did some last minute cooking and pulled it off with a revised menu. So much fun (bouncy house, sidewalk chalk, flooded the sandbox and filled the 'boat'), and most important, spent time with the people closest to us -- love our family!

June 1st

Watched Pollyanna tonight with my girls -- at the end, as the whole town came to see Pollyanna off to surgery, I got a little teary eyed. Then I noticed Annie was wiping her eyes. Then suddenly, five year old Ellie exclaimed in surprise, "I'm crying, Mom! Crying! Why am I crying?!"

June 6th

Ellie's Preschool Graduation

 

 June 15th

For the first two months of our medical drama journey with the kids, I felt like I was completely buried so deep in all of it that I couldn't see any light. The kids were complaining MORE often that their stomachs were hurting than when they were eating all the offending foods, eczema seemed to be flaring worse and more often, and the behavioral stuff seemed to be reaching a peak with Ellie. Then just this morning, I looked around and realized, it's been over a week since Ellie complained about her stomach hurting (except the morning she threw up), she's sleeping through the night more often and having less emotional breakdowns, and her eczema is the best it's been since she was a baby. My little girl is feeling a lot better. I almost hadn't seen it, but things really are improving. (Well, for her, Owen is another story, and I don't think we've found all the answers we need for him yet. Isaac's still up in the air too. Annie's been asymptomatic all along, so for her we just won't know until the next endoscopy how things are improving.) But Ellie is doing way better.
Although, I think I may need to call and check in with her doctor anyway, because we realized this morning she's down almost a pound and a half since we started the gluten free/top-8-allergen-free diet with her over two months ago. I thought for sure once we addressed food allergies/gluten, she'd start to gain (which, in theory, she should, since she shouldn't be malabsorbing anymore), but it seems to be the opposite. But, it's summer, she's more active, and we're eating all whole foods (we ate pretty healthy before, but we're down to almost zero processed food now -- because there is almost none that meet our food restriction criteria). So, it's probably nothing to worry about . . . and coupled with all the improvements, I'm still choosing to believe we're on the upswing in all this . . .

June 16th

Isaac describing the fireworks he watched last night with Grandma and Grandpa, "Mom, they were BEAUTIFUL . . . they spread across the night sky . . . big and little, so powerful. Sigh, it was just beautiful." Seriously, my two year old has the heart of a poet  

June 18th

They conspire against me! I was so excited to go to a Relief Society tonight and now Greg will be gone and Owen's running a fever again, so I can't take him to the nursery for it . . . I'm never gonna leave this house again . . .

June 19th

So, my 17 month old keeps coming into the kitchen, getting out a spoon and the container of coconut oil and asking, "More?" I've just been feeding it to him by the teaspoon . . . is that weird? Maybe he'll get onto the charts in time for his 18 month appointment if he keeps eating oil by the spoonful?

I've been trying to follow the kids' strict allergen diet, since I'm still nursing Owen -- but last night broke down and split a Frosty with Greg after the kids went to bed. Unfortunately, Owen woke up sick in the night, I ended up nursing him, and now this morning his whole stomach and chest is covered in hives . . . poor kid. I'm so frustrated . . . for him, at myself for 'cheating', at our diet restrictions, at the mounting questions and dwindling answers, and how by following a strict diet it just makes every reaction so much worse. For the last year anytime Owen had any dairy (never much, but some), he never once got hives. Now he gets a little through breast milk and is a red, splotchy mess. Sigh . . .

 June 19th

 Pictures from the zoo with cousins/second cousins and pictures of trampoline-wrestling with Uncle Cody

 

June 21st

Longest day ever. Owen seems to be getting crankier each day, and I don't know if at this point it's his food/G.I. issues or if he still has a virus. Then, just to make his point that he was REALLY mad at me, he threw himself face first out the back door, down the step and onto the patio. Splitting his lip wide open. Sigh. Poor Greg too, after long hours every day this week, he thought he'd be getting off work early, but instead worked an 11 hour day. The nice thing about your parents wondering if you're cracking under all the pressure of your life is that your Dad may just show up at your house in the afternoon, chip the rest of the branches from the tree we cut down, then mow and trim the lawn. Maybe if I have a total breakdown, my Mom will come over and clean my house!
Thanks Mom & Dad, for everything!

June 22nd

I was so mature and responsible, and was home by midnight last night -- and from midnight on, Isaac, Owen and Ellie all took turns waking up every 20-40 minutes, and I don't know if I've ever been so tired . . . oh well, yesterday was a great recharge to my system! I was out of the house for 15 straight hours, just with friends, and didn't have to worry about feeding anyone but myself or change any diapers. So, I guess it's to be expected that the kids just missed me so much, they'd attempt to spend half the night hanging out with me! 

 You know what the best part of Ragnar is -- that for this one event, several of my favorite people came into town from several different states, and even though I didn't run I still got to meet up with all of them for celebratory Thai food and girl talk. Utah needs more events that bring all my friends to town! 

June 24thI was in the car with Isaac and we were talking about how we were going to get to see Connor and Nathan and Ian and Claire and Uncle Chris and Aunt Liz and Aunt Andrea tonight . . . he squealed for joy and exclaimed, "Aunt Andrea!!! I LOVE her!!" Then he paused, and solemnly added, "Well, you know, except for her leg . . ."  (She's recently had knee surgery)

 

 

The Path We're On

http://thebookofarmaments.blogspot.com/2013/06/feeling-brave.html

My sister in law, Liz, called me the other day to tell me she was going to post something on her blog, but she felt a little vulnerable about it.  The funny thing is I read it and was like, "What would anyone object to?  Laying off each other?  Being less judgmental?  Being more loving?  What could anyone complain about?"  And yet, I know her fear.  Because I fear it too.  I've been a member of my Church my entire life, and despite some 'rebellious periods' where it wasn't always my first priority, it has always been my home, the base of my faith and relationship with God.  I am as Mormon as they come.  And yet.  I sometimes wonder if I don't fit it, if I'm a 'square peg Mormon," as Liz put it -- which I find baffling.  I mean, seriously, pretty much as Mormon as they come!  Right down to genealogy books full of pioneer ancestors. I want to and look forward to raising my children in this Church, teaching them the gospel I love, growing the next generation of Mormons.

And yet I keep finding myself on different sides of issues, that make me feel like I'm ruffling feathers, that I'm making waves.   That are making people 'doubt' my 'Mormon-ness'.  I noticed it first when I was shocked and hurt by the reactions the 'Wear Pants to Church' movement was getting.  The fact that anyone would give anyone any flack over what they wore to Church was about the most baffling thing I'd ever seen, and the fact they were 'calling out' these people for 'lack of faith' or 'lack of understanding' or for 'not really trusting the Savior or His prophets' was absolutely horrifying to me.  I said so online, expressing my frustration of us, as a larger culture, for not loving people where they're at.  I was 'unfriended' on facebook by several people.  I'd never ruffled feathers before.  I'd never had people question my testimony or commitment to the Church.  And it was unsettling. 

There's been so much talk about 'modesty' lately online, with the now viral 'bikini' video and the accolades and praise it's getting in conservative circles.  Here's the thing.  I dress 'modestly' by my Church and culture's guidelines.  I've never really wanted to dress any other way, it's how I feel most comfortable and authentic to my feelings about my body, about God and about my faith.  But, I am growing more and more resentful of the mounting 'modesty rhetoric' I'm seeing grow up in my faith community.  I get dressing modestly as a principal. I really do.  I chose to do so.  I will teach my children to do so (though by different means.)

Earlier today, referencing the 'bikini' video, I wrote:

"I love the idea of teaching my daughters (and sons) mindfulness when it comes to modesty -- to know, personally, why they dress the way they do, how it makes them feel, what they're trying to portray, to be able to acknowledge that they live in a larger culture and those things they wear do send a message, and they have to figure out what message they're trying to send. I want them to wear clothing that makes them comfortable, fits the occasion and speaks to who they are and what they're trying to accomplish in life. I like the last part of her video where she talks about how are we going to use our beauty, our bodies -- these are issues I want my daughters aware of and thoughtful of. I just don't love that a sales pitch (including completely skewed study data that is being manipulated to make more sales) is being touted as some model for modesty. She's selling swimsuits -- she's claiming men (though admittedly highly sexist college students in the study) are somehow turning into slobbering objectifying Neanderthals when they see a women in a bikini -- but what about the swimsuits she's hawking? The study she uses didn't even use images on one piece swimsuits -- they showed fully clothed women and then bikini clad women (with the heads cut off) and then the study (shockingly) showed that self-identified sexists college guys brains reacted differently to the headless bikini clad woman than the fully dressed ones. My children will never be able to control the thoughts of every jerk, misogynist or pervert out there -- so they need to confidently make their own decisions about their choices in terms of how they present themselves in public, and feel confident in those decisions, because they'll never be able to please everyone or avoid objectification. We can only control ourselves, not others, so my job is to teach them self control and understanding of what is in their sphere of influence, and how they want to present themselves when they're outside of it.
 
 "I just think modesty is so much more than how much or how little of our bodies we cover -- and I want my children to respect and treat the same any person they meet, whether in bikini or burka, and to understand that clothing has to be one of the very worst ways to judge someone's character. 

"From this post, "Jesus did not say “Whosoever lusteth after a woman…should tell her to put more clothes on, already, she’s causing him to have impure thoughts!” Jesus laid the blame at the feet of the man whose heart was filled with lust, not the women he dehumanized. And so should we. Because lust is a problem of the heart, not of the wardrobe."

I also added this:

"I want my kids to value themselves and others merely for 'being' -- being children of God. I just worry sometimes that the endless modesty rhetoric around them will subconsciously teach them that dress is far more important than it actually is . . . when my four year old comes home and talks about a neighbor child being 'immodest' (which is basically 'bad') because she's wearing a tank top, and that's something I've NEVER taught her, and I now have to 'reprogram' my four year old to value people in tank tops, I get frustrated . . ."

True story -- Ellie recently was whispering with Annie about another neighbor girl who was 'dressed immodestly', in a voice that dripped of condescension. My heart dropped.  My spunky, loving, amazing little girl was judging someone because she had a tank top on.  A five or six year old, riding bikes in the summer, in a tank top.  Could there be anything more innocent or childlike, and my precious little girl was looking down on this other person.  (Which is ironic, as she is currently wearing a tank top and didn't think twice about it.)  It reminded me of a conversation I'd had recently with one of my sister's (who shall remain nameless) on how bad she felt when she was in her early 20s and it dawned on her for the first time, "Ohhhhh, people who drink and smoke aren't BAD, they just weren't raised with those things held to the same standards as me." We can have a family standard of what is appropriate to wear or not (though I do want my children to learn to make those decisions on their own eventually, so they are their own personal convictions, not just 'what we do'), and we can judge how we personally fit within the standards of our faith community.  But, what we can't do is judge what is 'immodest' or not for another person.  Everyone determines their own standards of what is and isn't acceptable to them, and we get to respect people where they're at. 

So I added this:

"The measure of someone's character is how they hold themselves up to their own standards, their own beliefs and their own values -- not how well they match up to mine. I just want to teach my kids in a way where they never mistakenly believe that because someone believes or does differently than we do (smoking, dress code, Sunday activities, whatever) that this lessens or changes their character. God judges the heart, and since we can never know what's going on inside someone's heart, I'd rather err on the side of compassion and acceptance and love, and not judgement or assumptions. I think commenting on other people's dress is pretty much drenched in either judgement or assumptions, so I'd rather stay away from it . . ."

I see any push back on the modesty rhetoric with this hardline, "But this is the way it is . . . you don't doubt the Church do you?"  But that's the thing -- this isn't doctrine, it's cultural.  And the culture is changing, and probably in response to an ever increasingly sexualized world, we Mormons seem to be 'clamping down'.  Look at prom pictures from 40 years ago, unendowed women were often wearing tank-top type sleeved dressed.  My Grandma and Mom have pictures in high school in lame jumpers that were pretty darn short.  It wasn't seen as immodest.  Now, my four year old is policing the shoulders of other children.  That's an issue.  In 1977, Spencer W. Kimball said, "Can there never be another Michalngelo?  Ah, yes!  His David in Florence and his Moses in Rome inspire us to the point of adulation . . ."  Here Spencer W. Kimball is praising the David, one of the most famous nude sculptures in the world.  Apparently, at that time, we understood the difference between 'porn' and 'art' and 'nudity'.  Fast forward to last year, and there was a painting by Carl Heinrich Block, called "The Ressurection" (1873) that was featured in the Ensign, an official LDS publication. In that publication, they photoshopped this classic painting.  Besides removing the angel's wings, they added 'Shade-like' shirts to the angels.  Really?  We photoshopped 200 year old angels to be more modest?  Doesn't this seem like overshooting . . . missing the mark . . . focusing on unimportant, or less important, things to the point of just being, well, weird.  One of our great prophets could look upon the David, and be moved by the beauty of it and the mastery and talent.  Now 'immodesty' is seen as such a huge issue that some mid-level employee at the Church thought, "Quick, we better cover the shoulders of centuries-old painted angels."  Is the human (or angel, I guess) body so scandalous and perverted in our thinking that all must be covered?

“But then we ask, “Can there never be another Michelangelo?” Ah! Yes! His David in Florence and his Moses in Rome inspire us to the point of adulation. Did all such talent run out in that early century? Could not we find a living talent like this, but with a soul that was free from immorality and sensuality and intolerance?”
Yes, he referenced Michelangelo’s David, The same David who’s penis is there for all to see. SWK was fine with that, but the Ensign is worried about shoulders? Something is fishy…
- See more at: http://www.dovesandserpents.org/wp/2012/05/on-immodest-angels/#sthash.tPy0ZzvR.dpuf

You don't have to agree with my take on these things.  Like Liz's post said, we can both pray about something and come to different conclusions of what is right for our families.  I personally am a little disturbed concerning some cultural things happening in my Church.  And I'm afraid of how I'm perceived because I see them as concerning.  But, this is the faith of my Fathers.  Mormondom is my home.  I have a deep love and appreciation for the gospel, and especially of my Redeemer, Jesus Christ.  I don't like being made to feel 'less a part' of my own Church because I don't 100% agree with every cultural thing that finds itself coming across a local pulpit. 

I would love to see us, collectively as an LDS culture, take a step back and remember the words of  Joseph Smith, "I teach them correct principles and they govern themselves."  We can preach a standard, but we have to allow people to make their own choices, find their own path.  Why have we become so threatened by people that are in their own place on their own faith journeys?  It's like we want everyone to be in the exact same place at the exact same time, without allowing people their own time and space to 'govern themselves'.  If people aren't allowed to question, push back, take their time, or find their own answers -- and we push them out because they don't see things the exact same way we do -- they will leave, they will find a new place to find their answers.  And I believe, one day, God will hold us accountable for the roadblocks we placed in other people's progression.  I believe that faith in God, real faith, means that we trust Him enough to take care of and guide His own children.  I believe that while God may have some hard and fast standards that he requires of us, the greatest is to love one another.  We only need to be concerned about ourselves -- and then focusing on loving others where they are at in their journeys.  Everything else, let's just let God worry about it.  He loves that person as much as He loves us, so He will work life in a way that helps that person get to where they need to be in this life.  We can either lend a loving hand, or throw up roadblocks, and I imagine only one of those things is pleasing before God.

Liz quoted a mutual friend of ours in her blogpost, as saying to those who have left our faith, or who feel unwelcome or unloved there, or like they don't fit in, "We love you. We miss you. We want you back, no strings attached. Wear what you like, attend as often as you feel comfortable, serve in ways that fill you up, contribute whatever you can. There are no barriers to entry, no percentages we will require of you. Come as you are. We need the parts of you we don't have in common because those are the things we lack. We equally need the parts of you we do have in common because those are the things that make us family. We're sorry it took you leaving to help us see how valuable you are, in your own right. Please forgive us. Welcome home."  I honestly can't imagine anyone having any issue with that?  I guess I can see an argument of, "But, if you sacrifice nothing for the gospel, how can there be any reward?"  To which, I guess, I'd respond that let's just get people back home, or in a place they feel accepted and loved.  Love them, accept them, and let God work from there.  But if they never sit next to us in Sacrament Meeting, how can they ever learn and grow in the gospel?  How can they ever add to our community?  Everyone's path starts somewhere, so why are we so stuck on everyone having the same view from the same point on the path as us?  I want to just trust God that He guides each of us in this life, and my duty is to just try and love as He does, and leave the rest up to him.


I wish I could say I'm unaffected by being de-frieneded because I take a 'controversial' take on something on facebook.  (Still baffling to me, since my biggest controversial takes were 'we shouldn't shame and threaten to kick women out of the Church for wearing pants' and 'let's watch out that modesty doesn't take a Pharisaical turn and drown out the more important doctrine of love and supporting one another.) Especially when I feel such love and acceptance from the Savior in my life right now when everything else has been so hard, that it pains me to think someone else looks at something I share and thinks I'm somehow way off track.  But, I guess at the heart of it, I just need to practice what I'm preaching here -- and let go, and let God.  Trust that God is leading me on the path He would have me on, and let everything else fall by the wayside.  I can do that, right?

Relentless

OK, so is it some big, hidden secret that motherhood is this relentless, this hard, this discouraging, this demoralizing and nobody talks about it, or am I the only one who feels this way?  I don't hear other people talk about it.  Sure, I got some mild, "It can be hard . . . " warnings, but followed with, "but it's all worth it."  And don't get me wrong, I don't doubt the 'worth it' part, but this is beyond hard.  This is soul sucking.  I changed 8 blow out diapers yesterday.  Eight.  Not just poopy diapers, I changed another 4-5 of those, but ones that actually blew out and involved an outfit change.  It's noon, and I've already done three blow outs today.  The last one in the middle of the front room floor, meaning I just carpet shampooed my disgusting looking carpet for the THIRD time in the last week.  I am so done fighting with the kids trying to get them to eat healthy, to get to the root of these health problems, that the last two mornings I've let them eat Cocoa Pebbles for breakfast (rice isn't good for Ellie right now, so it's something we should be avoiding -- processed food in general, especially grains, are particularly counter-intuitive for healing a newly diagnosed Celiac's gut).  They've gorged themselves on popsicles, while I've spent all day holding a tiny, shrieking, miserable 17 month old who's been running fevers or having diarrhea for nearly a week now.  I am to a point where I feel we do not have one single thing going right.  My kids are cranky, the baby is miserable (feeling and to be around, frankly).  I feel like summer is slipping away so quickly while we do nothing but damage control at home.  My housework is piling up to completely overwhelming-will-I-ever-catch-up? levels as I do nothing all day but make food, get bit by a cranky baby, change diapers, do diaper-related laundry and clean up the kitchen.  Again and again and again.  My kids are bored.  So bored.  I turn on the sprinklers and let them run, but it lasts a few minutes.  They just want to watch TV, and I feel endlessly guilty when I let them do it for hours, and when I refuse them.  It's a no-win.  They beg for my attention, but I just end up snapping at them to leave me alone because I'm holding a screeching baby who's been angrily screaming and thrashing, and that I can't placate to save my life.  I have eaten nothing but ice cream today, despite the fact it makes me feel like crap, not to mention horribly guilty, since it's adding to Owen's gastrointestinal issues and pissy mood. 

I have never so badly wanted to just disappear.  To runaway?  But then I'd still just be worried about what they were being fed and if their stomachs are hurting and if whomever is watching them understands cross contamination or what ingredients are hidden sources of wheat or dairy.  To cease to exist.  Just for awhile. 

I put Owen in his high chair with a bowl of spaghetti as I sat down to type this -- about 3 minutes in he started screaming, throwing his food onto the floor and ferociously waving his 'all done' hands.  He's had like four bites.  He hasn't wanted to eat in days.  It will take me three times longer to clean up the mess from lunch than it took him to eat his meager meal.  And he'll want to eat again in an hour, because he hasn't eaten enough to fill up.  I will have to start thinking about what we'll eat next before I even finish cleaning up this meal.  I need to get some quinoa going in the rice cooker while I'm thinking about it.  And I'm ALWAYS thinking about it.  It's hard to even leave the house, because food is such an issue.  This is not the kind of Mom I thought I'd be.  I thought I'd be fun, we'd play in the sprinklers or go to the park all summer; but before we even walked there I'd already have a blow out diaper to change and a new diaper rash that's making the baby cry, and we'd have to come home to clean off and change outfits anyway.  Is motherhood always just damage control?  Is it always this hamster wheel that never goes anywhere, just over and over and over the same issues day after day?  Some relentless groundhog's day I will never win at?  Or am I doing it wrong?

(Edited to add:  Not an hour after I wrote this, Owen was angrily yelling at me because I wasn't holding him while peeling and slicing up a cucumber for his siblings (I'm all picky about not wanting to handle knives and grabby babies at the same time).  He looked at me, glared, yelled again and then freaking threw himself off the back stair, face first, onto the back patio.  He split his lip and bled all over us.  Sigh.  This is the second time that out of anger with me for not picking him up or doing what he wants me to do, he has thrown himself off a porch step and busted his lip.  I felt so horrible about it, but I couldn't even bring myself to show him much sympathy.  I mean, of course, I picked him up, got him cleaned up and held him while he cried for the next 20 minutes, but I was so annoyed by the whole thing that I didn't coo and comfort him over and over again.  I just let him rest on my shoulder and bleed all over us.)

Life is Messy

It's a phrase Greg and I say back and forth when life seems tough, "Life is messy."  And it is.  I've long since let go of my idea that life was a walk in the park with occasional thunder storms that passed through, soggied things up for a minute, but then skies cleared and things were crisper and cleaner and more beautiful than every before.

Life is hard.

And that's OK.

I am just starting to realize that the point of life isn't ease.  :-)  That the very nature of life, the messiness of life and death and health and disease and all the dirty diapers that fill in the middle, is all part of the ups and downs of life.  Don't get me wrong, I'm not all doom and gloom, I've just readjusted my expectations of life, and I'm realizing that I'm not caught in one big crisis after another, I'm just riding the waves of lives, and it's the expectations that made me feel like I was in crisis mode, and it's in changing my expectations that I can ride out the waves with less stress.

But life is beautiful.  I have four beautiful children, and they're amazing to watch grow.  It's heartbreakingly hard to watch them suffer or be in pain, and the sheer weight of it sometimes feels like it's going to rip my heart from my chest, but they're just so resilient.  And happy.  And the stress of the dietary changes and worrying about their futures sometimes feels suffocating and maddening, but if they're so happy and resilient why shouldn't I be.

I don't know what the future holds for any of them -- their diagnoses have filled our life with uncertainty and more questions than my heart can deal with during the day, so they sometimes keep me up late into the night -- but I know they're happy, and resilient.  And that's enough for right now. 

I have to worry about it all -- I'm the Mom.  I have to obsess over what goes into their mouths whether they're home or away, every morsel, all day long, for four different kids -- but I don't have to let the worry take over.  I swear, nothing hurts more than hurting for your kids.  But, I don't have to let it carry on months and years into the uncontrollable and unforeseeable future.  I can worry about doing my best as their Mom and caretaker right here and right now, then just trust that it'll be enough.

I'm embracing the messiness of life -- and that includes making mistakes.  Celiac for Ellie was pretty straight forward -- go off gluten.  For life; never again; not a bite.  Problem solved.  It sounded hard, but doable.  Terrifying and sad, but straightforward.  At first the EoE was basically an afterthought, our 'bonus' diagnosis.  But as I've learned more, studied, read, reached out to other families, joined support groups, I've realized that this may just be the beast we're up against, the real fight.  Not the Celiac.  These EGID (Eosinophilic Gastrointestinal Disorder) diagnoses are a lot messier.  So much more trial and error -- potentially years of trial and error.  My heart aches as I take my kids off a list of foods, not knowing if we're even addressing the issue at all, and wondering what nutrients and minerals I'm denying them that they wouldn't have reacted to anyway.  It's just messy.  But, life is messy.  We probably won't get this right on the first try, especially not with four kids.  But, eventually, we'll figure out what we need to do, and we'll learn from each mistake and it will bring us closer.

Sometimes I lay awake at night, trying to figure it all out in my head. The incredible odds of ALL FOUR of our children suffering from EGIDs (the first child had a 1 in 2000 chance of having EoE, and each additional child had about a 4% chance of having one with a sibling diagnosed.  We are four out of four -- we should go play the lottery or something with our amazing odds-defyings ways.  I've talked with women who's children are on feeding tubes at 8 or 9 years old, unable to eat even a single food, and they find out four of my kids have this disease and they just find themselves stunned and speechless).  There's the endless frustrations of eczema flare ups and continued diarrhea that suggests we're not to where we need to be yet -- and we may not even be on the right track.  I mentally catalog all they eat, all their symptoms, each complained about tummy ache that I then mentally calculate the odds of whether it was a 'real' one or an attention seeking ploy.  (We're actually putting together a spreadsheet for all of it).  I start to think ahead to class pizza parties, wedding cakes, mission diets, and I soon realize I have to shut down the track my brain is on or I will drive myself insane.  But, it's not always easy as the brain has an amazing ability to run through every last possible scenario, no matter how heartbreaking or scary.

There are days I stand in the middle of my kitchen, open the fridge and just sob.  Food has become both healer and disease, both ally and enemy.  The ever present stress of what they are going to eat next, what I'm going to send to school for snack, for lunch, for preschool, for nursery, plus meals and treats and on-the-go snacks . . . all while contorting our diet into a new, seemingly impossible mold.  Food has become my taskmaster, my torturer -- there is no let up, there is no break.  Every classroom snack, friend's birthday party, outing from home, dinner with friends, I have to have thought of and prepared ahead of time.  It is never anyone else's responsibility anymore, it falls on me every time, every meal, every snack, for all four kids. The stress of trying to feed them as healthy as possible, so they can heal, so their bodies can do what they need to do -- balanced with the demands of childhood -- popsicles with friends, suckers at tumbling, icees with Grandpa.  Where do I draw the line on goodies, and where do I let them enjoy childhood in the midst of their world of restrictions?  Food has become both ally and enemy.  My own battles with food intensified this last month, after months of healthy eating and 20 pounds of weight loss, the stress and ever present demands of feeding the kids such a restricted diet, started to take its toll as I sought no other healthy means of stress relief -- I would eat Oreos in the closet during naptime, sneak out and buy a brownie as soon as Dad got home, go out after bedtime for some bread, I would look forward to and plan those moments of escape, and after a month, my body rebelled and my mind screamed at me as it recognized it's own dysfunction.  My face broke out, my fatigue returned, half the weight crept back on, my melancholy grew, I spiraled into shame as I realized what I'd done, how unhealthy I was handling it all.  Life is messy.  But there are things I can clean up -- starting with myself.  I'm back to eating the same diet as the kids (as I should've been all along, since I'm still nursing the baby and his diet should be as allergen free as possible right now too), I'm exercising more, I'm taking a little time to read, we're getting out to the park (complete with our meticulously planned and packed snacks), I tried yoga the other day (Isaac was helpful, "Mom, they're standing up again.  Why aren't you standing up again?  Come on, Mom . . . up . . . ")   I decided to blog about what we're going through.

Life is messy.  It can be hard.  It can be heartbreaking.  It can knock you flat and leave you in tears.  It can be uncertain and oh-so-scary. 

But it's endlessly rewarding.  And it's all worth it. 

 

We're gonna be OK.  We're going to learn a lot.  We're going to be in control of our health in a way we never have been before.  We will find answers -- they may not come quickly, they may not all be what I want them to be, but they will come.  (As will more questions, but that's life.) 

Life is messy -- just like it's supposed to be.  When I check my expectations at the door, I feel more peace than I have in a long time . . . it's not constant, and there's still more times than I'd like where fear wells up from my stomach into my throat 'til it feels like I'm choking a little, but it's OK.  More peace is coming.  More answers are coming.  And we'll be OK no matter what comes . . . 'cause we're learning to embrace the messiness of life.