On November 2nd, our baby girl was diagnosed with Celiac Disease. Okay, she’s not a baby; she’s six, but she’s still my baby. This baby has been flipping our world upside down since before she arrived, and if she wasn’t so darn adorable, I might be more upset about it. After the long journey we’ve already had, though, this new diagnosis hit me hard. We had three phone calls with GI that first week and each time, I felt like there was a new wave of “I didn’t think of that” revelations. Not fun. In a matter of days, we sank from the high of having possibly her last surgery with her beloved ENT to having a new diagnosis that would have us emptying our pantry and cupboards and refrigerator overnight. I’m not just talking about food here, though. On diagnosis day, I was only thinking about food. We’d just come out of Halloween weekend and we had pumpkin buckets brimming with candy and treats. How much of that could she still have? What are we going to eat if we can't have pasta and bread and sandwiches and pizza? We’re talking about a little girl who loves mac and cheese and nuggets and fries. Thankfully, she eats just about everything, but her favorites were not ideal. I filled two trash cans with things I knew we couldn’t use but were already open: pastas, baking mixes, cereals, pretzels, snacks, and leftovers. I vented to a few of my closest friends and family members and felt overwhelmed. Then came the surge of information from the dietitian on how celiac was so different from non-celiac gluten sensitivities. While all gluten sensitivities can be severe, a celiac diagnosis meant that Ellie couldn’t have gluten at all – ever – and every tiny spec of gluten in her food can and will damage her digestive system, leaving her more susceptible to things like lymphoma, digestive tract cancers, malnutrition, and osteoporosis. How many parents are out there with the threat of osteoporosis looming in their minds as they prepare meals for preschoolers? Bleh – this just felt like too much at once.
In the thick of that, I was educated on the risk that
cross-contamination has on food preparation.
Basically, any pot or pan that wasn’t stainless steel had to be replaced
(we owned one stainless steel pot). All
plastic bowls or cups, measuring cups and spoons, storage containers, all
cutting boards and strainers, our toaster, kitchen utensils, and at least half
of our spices all had to go – plus any baking ingredients like sugar or baking
soda that could have been contaminated with a measuring spoon/cup in previous
baking adventures. Our kitchen was
naked. Our fridge had been slowly dying
for months and wasn’t going to make it through the month – that needed
replaced, too. Early November brought
the purging of almost all food and food preparation tools we owned. I felt a mixture of complete chaos and peace
at the same time. That corner cabinet
that was stocked to the gills with storage containers – the ones that had lids
with no bottom, y’know? That cabinet was
bare. The snack cabinet that was always
stocked with cookies and cereal and snack bars and pretzels now held only
popcorn and peanuts. The skinny cabinet
with the cutting boards and cookie sheets – freakin’ vacant. We could keep anything that was stainless
steel (one pot) or glass (a few cups and two baking dishes). The rest had to be replaced. Fortunately, I have some nieces and nephews
and friends who needed dishes, so all that we purged found good homes – and I
kind of felt like a newlywed walking out of her bridal shower when all of my
new dishes and utensils arrived over the next week or so. We were making progress. Brandon was sure I was overreacting with every
new box that Amazon or FedEx dropped on the doorstep (Do we really need GF bath
soap for her? Short answer: yes). One of the hardest realities was that we
could never cook or bake anything containing gluten in our household again –
unless we wanted to repeat this lengthy process. Now, we didn’t have to switch our entire
household over to a GF lifestyle.
No. We could have bought
duplicate sets of it all and tried to keep the two separated. But we also had to clean our oven and think
about things like the contamination of our microwave and dishwasher. I do not have the capacity to keep two
different sets of dishes straight in our household – I can barely keep up with
what we have already. On to the next
hurdle!
Eating out. Now, the
first week, we ate everything at home. I
made about four trips to four different stores to scour shelves for GF
options. I had suggestions rolling in
from friends – everything from the best baking mix to the items where gluten
hides (cheeses, meats, spices). I tunneled
into Pinterest and pinned a thousand recipes.
I convinced myself that before Christmas, I want to master the art of
the macaron – random, yes, I blame Pinterest. But let me be real about how our life has
gone for the past six-ish years. When
our boys were little, we ate home-cooked meals all the time. We bought organic everything and I made all
of their baby foods from scratch. Because
of skin allergies, I made all of our soaps, laundry soap, lotions, sunscreen,
lip balms… it was intense. For me, it
was a labor of love and I was kind of a crunchy hermit, y’all. Then came Ellie. Ellie brought with her hundreds of
appointments (even before she was born) further from home. Countless surprise hospital stays and a life
in constant disarray. We love our crazy,
messy life with our family of five, but along with the chaos came a dependency
on meals out. Sometimes these were
drive-through sacks on the way home from appointments, sometimes they were
meals out with the boys to give them some attention while a nurse was at home
with the baby. It’s not healthy, I
know. It’s done a number on my
waistline, too. But sometimes, when life
felt heavy, a bucket of chicken on the drive home helped us maintain some
sanity. As I felt the convenience of eating out slip away from us, I kind of
panicked. I cannot go back to Becky Home
Ecy… I can’t… I am not the same mom I was so long ago. I love to cook, but I need meals out to feel
some freedom. How was I going to stay
sane without Mexican food? I’m dramatic,
y’all, I know. But I was not ready to be
the person who called ahead to a restaurant to see what their prep space looked
like, to ask about their fryer oil and ask someone to change his/her gloves before
they made a special meal. I’ll get there
at some point, but I’m not there yet.
When other people said, “just eat healthy, it shouldn’t be that bad”, I
knew that what they were saying was true, but I was grasping for that sliver of
normalcy and sanity that someone else cooking offered, dang it.
Then, when I got out of my head long enough to look at all
the little blessings around, I was overwhelmed again – but in the best
way. I had a friend send me a text
telling me to stop by her meal prep business to pick up a week’s worth of meals
especially for Bug, other friends who pitched in to help with the kitchen
overhaul, friends from near and far sending favorite apps, recipes and tried
and true GF brand recommendations. Recommendations
coming in for meal delivery options that have certified GF choices and offers
to order a box for us, too. Grandparents
who scoured their stock of snacks and sent us home with ones marked GF and
listened to me endlessly unravel over the smallest things. And our boys, who after hearing that their
little sis couldn’t have gluten at all, emptied out those big candy-stuffed
pumpkins and started reading labels with me.
They sorted out all the candy that Ellie couldn’t eat and helped me
package it up. They didn’t put up a
fight when those bags of candy were sent home with someone else. We may have experienced two different
meltdowns over Oreos so far, but these boys are pretty amazing with this. Countless people sending their virtual hugs,
praying for healing, and giving us their best advice on supplements to help
with digestion. None of this is going
unnoticed, y’all… every single little act of love is a hefty dose of
healing. Every. Single. One.
We did try to eat out at a place that (according to google) had several gluten
free menu items.
We ordered said options, and before we left the restaurant, Ellie was
climbing on my lap in tears telling me how her tummy hurt. We headed to the
bathroom three times before we could make the 11-minute drive home. She was a mess. Now we know better. She spent a solid week and a half back in
pull-ups because the process of healing a little gut can be, well, messy. We’re still going to do almost all of our eating
at home, but we know from eating out two more times that if we pack in whatever
she is going to eat, and make sure she only has those items we brought, she
will do just fine and we can still enjoy the occasional meal out together.
All in all, life is good. Life is so very good. I may have overreacted a few hundred times –
I may have spent some time having a pity party about Chinese take-out, but
things are really just fine. Surround
yourself with people who stand in the gap – I cannot stress this enough. Surround yourself with people who will take
you out to throw pottery or create a Christmas porch pot when the world feels
heavy. Surround yourself with people who
will check in on your dramatic little self and offer up food or coupons or
recipes or prayers. In a year when so
much seems so dark and hopeless, I see light all around me. I have found the helpers – again and again –
and they are where sanity lives (sanity is not in tacos).
This week, I am hosting a tiny Thanksgiving (for the first
time ever) and we’re doing it 100% GF.
Let’s be honest, I bring most of the crazy upon myself, but I need to
prove to myself that it’s possible. It’s
like the first time we brought the trached baby to the beach and I had a full
on panic attack, but I had to prove that it was possible and it was so worth the
stress. Thank you all for your endless
support. Of all the things we’ve faced,
this seems like a molehill – but it’s still a big change and takes some
navigation and time. Thanks for loving
me through my meltdowns and for endlessly pouring into us in our chaos. If 2020 has shown us anything, it’s that even
on our worst days, we have so much to be thankful for.
Moving forward, maybe I’ll share some recipes that rock my
face off. Who knows? Maybe I can someday return the favor for
someone else and give them a slice of sanity as they adjust, too. Maybe this little Bug of ours will someday be
a GF foodie with lots of ideas and treats to share.
