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.