The next chapter: Life minus gluten

On November 2^nd, 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.

Big smiles from this little girl

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.

Spider hat - check

Sneaking her kitty everywhere she goes - check

My chocolate chip cookies got a GF overhaul... and they are AMAZING!

If I start sharing recipes, I'm going to have to beef up my food photography skills - eek.

#blessed on Christmas

Wait for it. It’s Christmas Eve and do you know what that means in the social media world? It means that by midnight tonight, you will have seen no less than five of your social media pals post photos of their living rooms bursting with gifts stacked to the ceiling, overtaking all of the surrounding furniture.  The packages will dance in the twinkling Christmas tree lights, ribbons and bows cascading down the mountains of gifts and the innocent poster will write something along the lines of, “They’ve been good this year”, or “Santa stopped here”, and most of them will tag this post “#blessed”.  At that, I will virtually throat punch said poster.  

Not because I don’t want to see photos of their beautiful tree and decorations… not because I’m jealous over how full their living room looks… not because I think they’re trying to outdo their friends (although part of me certainly feels this way). I want to throat punch people who tag their mountains of gifts with “#blessed” because I really don’t feel like God has a single care in favor of your consumerism.  I just don’t.  If you want to shower your family in a multitude of gifts tomorrow – do it.  If you want to post a thousand pictures of how excited little Johnny was when he saw the Lamborghini you bought him in the driveway – cool, maybe he deserves it.  Just don’t pretend like that’s the overflow of God’s endless love for you.  It’s not.

Maybe I have this stance because I can honestly say that there was one Christmas in our family where we felt the Christmas Spirit absolutely saturate every second of Christmas Eve and Christmas Day… even a few days later.  There were presents, yes… but not an abundant amount.  There was sadness and heartache and boundless love and joy that leapt from our hearts.  That, my friends, was the Christmas when I felt like we were truly in God’s presence and where I felt like He was showering us with blessings through others around the clock.  So this Christmas Eve, I want you to look around you and seek out the true blessings you see – I promise they’re not under the tree.

Blessed is the woman whose house is full of the laughter and excitement from her grandkids, but painfully absent of the voice of her husband for the first Christmas since he passed.

Blessed is the man showing up full of energy and love – holding up his children with cracked and calloused hands.  He’s been working double shifts – sometimes late into the night – supporting the family he dearly loves.  His body is more tired than you can imagine, but he’s here and he’s savoring this little time he has off.

Blessed are the young parents scraping by each and every day who are watching their children open the gifts that their church family surprised them with to make Christmas a little less stressful.

Blessed is the man spending this season deployed – again – missing his family tremendously.  And blessed is his family praying diligently that he comes home safely.

Blessed is the woman whose Christmas jammies lay flat against her rib cage this Christmas.  Cancer may have taken her breasts, but she is still here to celebrate with her family.

Blessed is the couple sitting with empty arms again this year – waiting as patiently as possible for God’s timing in starting their family.

Blessed is the Dad decorating windows and doors of a hospital room with as many festive window clings as he can find because he can’t bring his little girl home for Christmas – so he’s doing his best to bring home to her on Christmas.

Blessed is the single mom who wakes up to a cup of coffee instead of the joyous pleas from her children this Christmas – her kids are waking up at dad’s house.  This year was hard on her – the future seems a little brighter, but this morning, the silence is deafening.

Blessed are the families who have been given impossible news.  They’re gathering and celebrating, knowing full well that there is a loved one among them who will not be here next Christmas.  They’re doing their best to pass on traditions with joy this year.

Blessed is the mom who brought her kids to the cemetery again this year so that her young kids could decorate Dad’s headstone with ornaments.  Dad loved Christmas, and she’s trying every day to keep his memory alive for her children.

Blessed are the ones who sit at home with nowhere to rush off to – no planned visitors on Christmas.  Alone – just alone.

Know that God sees these people – these families – and pours out His blessings in a big way.  The blessings aren’t packaged beautifully, but they spill over and drown out the sadness and hurt.  His blessings offer peace in the storm – wholeness in the midst of brokenness – and joy even when the world is complete chaos.  So take the photos, shower your family with gifts in whatever way you want this year.  Just know that blessings can come as heartache and pain – blessings root us back to the true meaning of Christmas.  They bring us back to that baby in the manger who brought redemption to us all.  They are humble… they are miraculous… and they come with some pain.  Don’t miss these beautiful blessings this Christmas.  And don’t mistake your financial situation and ability to pile up the gifts as the blessing that God wants most for you.  There is SO MUCH MORE going on than that.  See the blessings all around you this year and if you’re like me and know people in every one of the above situations, BE the blessing to them.  I promise the joy you’ll find will not be gone by January 1^st.

A few of our biggest blessings this year:

UglyDolls in tutus

Please tell me at least some of you have watched UglyDolls.  If not, you should.  First, it’s a cute musical (who doesn’t love musicals?) and second, it has a powerful message about what it means to embrace differences.  For real, y’all, everyone can use a good dose of UglyDolls.  The cliff notes version is this: there’s a toy factory making dolls and toys.  When the quality assurance process in the factory detects a toy that is “different”, it kicks it onto a different conveyor that dumps it out into Uglyville while the toys that meet standards are rolled out into the Institute of Perfection… let’s call this Perfectville for the sake of this post.  Anyhow, Uglyville is a fun, vibrant, loving place and Perfectville is a place where difference is shunned and shamed.  Toys from Uglyville make their way into Perfectville and really shake things up – in the best way.  Eventually (spoiler alert), the towns become one and life is truly joyful for all.  Inclusion… not segregation or even integration… full inclusion brought love and joy and purpose and LIFE to both towns.  I preface this post with an explanation of this movie for a reason: this movie brought me to tears because of how parallel the story is to what we experience every day.  First, let me say that nothing about our lives before Ellie was “perfect”… but it wasn’t different, either… it was very vanilla.  And nothing about Ellie (or others like her) could ever be “ugly” in my book.  I’m using these because Perfectville here was the status quo… the “normal”; and Uglyville was “different” in the most beautiful and wonderful way.  Allow me to dive in.

Last year, we were stocking up on leotards and tutus, fitting Ellie for teeny tap shoes and peach leather ballet slippers.  That’s right, we had enrolled her in dance class and we were about to jump into a whole new adventure with her.  I posted so many times last year as I watched her twirl and shake poms and ribbon dance her way into the hearts of the other parents watching.  Was dance class a struggle?  Absolutely.  Did she get overstimulated and run away?  Almost every class.  She wanted to play with the barre or she wanted a better view of herself in the mirror… or there was a cute baby in the background that she HAD TO greet.  Dance class was hard and a big adjustment.  Did I leave sweaty from chasing her sometimes?  Yep.  Did I just not go somedays when I was an exhausted mom who just couldn’t that day?  Sure.  But in the end, it was all worth it, like so many other things parents whose children have special needs experience.  The struggle is real, but to see your child perform on that stage alongside her peers and see her absolutely rock that recital – every stressful second was worth it.

After seeing my posts about Ellie in dance, two other little girls with Down syndrome joined this class.  Let’s call them Miss K and Miss M.  Miss K was in dance for several months, but she wasn’t as thrilled about it as Ellie was.  She found that tumbling was much more her thing and went that route.  Miss M came to class with Ellie for “bring a friend” day and she loved it.  Miss M enrolled in dance classes this fall.  I know Miss M’s mama very well and we were both thrilled for this season to begin.

A few weeks ago, we received an email from the instructor offering a separate dance class for our girls (Miss K, Miss M, and Ellie) where they could get more one-on-one attention and more flexibility in structure.  When I first read through the email, I thought, “That is sweet of them… I know Ellie could have used a less stimulating environment”.  However… and this is important… life is stimulating.  Ellie doesn’t have any severe aversions, here, and it’s important to me (I speak for Brandon here, too) that she experiences life in the same way as her peers.  While I do think this smaller class could benefit Ellie, I also know that she NEEDS that larger class.  I countered the first email with an email back stating that we could maybe work this out if 50% of the time was spent in a separate class, but at least 50% of the time really needed to be with the “regular” class, too.  I knew this was a stretch… but let me tell you what else happened in dance class last year.  Remember me telling you about the other parents watching?  Some of them had three- and four-year-old daughters which were sweet as pie to my Ellie.  Those moms might have been watching their daughters seamlessly interact with a girl who was different for the first time.  Those little girls became friends of Ellie’s.  There was one little girl in the class who refused to interact with Ellie, though.  When they’d circle up and Ellie would extend her hand out to be held, this little girl would pull her hand away, sometimes screaming or saying “ewww”.  While this crushed me, Ellie handled it just fine.  By recital time, this little girl was finally okay with holding Ellie’s hand (y’know… nine months later).  As much as I wanted to pull my hair out over this, I recognize that this process was important… that this little girl eventually DID see that Ellie was just another little girl and didn’t have something she’d “catch” by holding her hand.  I digress.  Anyhow, dance class was amazing because Ellie loved it and because she was able to interact so fluidly with her peers.

About a week or so after I sent the email to the dance instructor asking to still be included in the full dance class, I got an email back last night.  The email said that this just wasn’t possible and listed all the reasons why these girls were not able to be in a “typical” classroom.  Reasons like: they have to be potty trained, they can’t run around, they can’t cry every class, they can’t run to mom and mom can’t call out to correct them.  Then the line that cut most deep: “If she shows me that she is capable of not running around and paying attention to her teacher, I can revisit this” in the future.  First, let me say that I think this instructor is trying her very best to give the best solution for her whole class… she’s a nice woman and I do think her heart is in the right place.  But here’s what is so wrong with this picture: I’m 99% sure that no other 5-year-old has to prove herself to be included in a class.  It would have been perfectly fair if she would have said to me, “I don’t think Ellie is really ready for dance class because she had a hard time paying attention and staying put”.  That would have been very fair.  But to say that Miss M and Miss K would be in this “special” class together with Ellie was simply saying, “because these three all have Down syndrome, I expect them to act like Ellie did and that was too distracting for the other learners".  OUCH!  I realize that a private business has a right to include or not include at their will.  I realize that having three runners in the class would be challenging, but I can also say Ellie is the only runner in the group.  She’s also crazy outgoing – something that maybe drew other girls to her last year.  The idea that these girls would be in their own class and perform at the recital alongside their teacher sends me into tears.  Can you imagine the auditorium packed full of people when this group of three girls comes out with their teacher to perform… all three girls have Down syndrome?  I can hear the pitiful “awwwws” already.  The teacher they were assigned was fabulous!  She worked directly with Ellie a ton last year and she’d be great.  But putting all the “different” girls together in one class… in one recital performance makes that entire audience of people think that these girls NEEDED their “special class” and couldn’t be included with the rest of their age group.  That’s not acceptable.  It perpetuates out-of-date stereotypes and does nothing but further segregate our world.

I was helping Kaleb clean his room when I got the email and quickly read it.  Then I sat on a stool and my frustrations began to well up in my eyes.  He saw me sitting and wrapped his arms around me.  When he saw my falling tears, he kissed my forehead and said, “Mommy, why are you crying?”  I’ll be honest, I don’t break easily these days.  I told him I was sad.  When he pressed harder, I had to collect my words before telling him how I felt.  I said, “It makes me sad when people do not see your sister the same way you do, Buddy.  It makes me sad that they don’t think she can do all the things that we know she can do.”  He started saying something about how she’d be okay and she’d make friends.  I stopped him and said, “But Kaleb, it’s not kids that I’m worried about… it’s adults.  We adults are the ones that have a hard time seeing her as just a girl.”  More sobbing.  When I felt strong enough to really talk, I sent a text to my friend and fellow Rockin’ Mom (that’s what we call ourselves as moms of kids with Ds).  She called me right away and I cried into the phone as I explained the situation to her.  I had to go outside while I talked, and I passed the garage where B was getting in a workout (I was trying not to interupt him yet).  He stopped the treadmill and stood there looking at me until I hung up the phone.  I recapped the whole situation to him, too – more tears.  He was instantly pissed… me, too.  As his eyes welled up with tears, too, we talked about how we need to go forward.  For me, it’s writing out my feelings in a blog post… that’s how I vent.  I’ll have lunch with Miss M’s mama today and we’ll discuss our feelings there, too.  Right now it’s just a lot of hurt and disappointment.

Remember what I said about Uglyville and Perfectville earlier?  The only time both communities experienced full joy, compassion, opportunity, and love was when they merged together.  We each have something valuable to offer one another.  We each fill a niche that is vital to the common good.  If we push all of the “not vanilla” into one corner so that our lives can move at a faster pace, we miss out… on A LOT.  I can post a thousand different research articles on how inclusion benefits both the typical and non-typical learner short and long-term.  Okay, maybe not a thousand… but a BUNCH of research articles.  I can tell you until I’m blue in the face how much Ellie grows because of the example her peers give her.  I can tell you that having Ellie in a classroom with her peers challenges her more and helps her achieve bigger gains.  I can also tell you that typical kids who grow up with an inclusive classroom (doesn’t have to be academic) are more likely to hire adults with disability when they grow up.  That’s a fact.  And in the future, when we’re facing a world where over 80% of people with disabilities cannot find work (that is the current reality)… you can bet I’ll be pushing for inclusive work environments, too.  But right now, I want Ellie to have a chance to make a new friend.  I want her to show the girl who’s afraid of touching her that there is nothing to be afraid of.  I want her to show up in Perfectville and shake things up… show Perfectville that there is so much more to life… that life doesn’t have to fit a set pattern – doesn’t have to fulfill that quality assurance check-list to be vibrant and beautiful.  Life outside of Perfectville is amazing… but if Uglyville and Perfectville were fully combined in real life… man, what a world that would be!  From the bottom of my hurt heart this morning, I’m thankful that you’re following along.  I’m thankful for your love and support… I’m thankful that you see our Bug for her… and I’m oh, so thankful for everyone who absolutely adored her recital footage I posted in May.  She freakin’ owned that stage!

Ellie with her UglyDoll, Ox

Ribbon dance was her favorite of all dance games

Two of the friends she made in class last year

Man crush

Back in the spring of 2005 I met Brandon for the first time.  If I’m being honest, I can’t say he made a huge impact on me that first meeting… he felt differently about me (wink, wink).  I mean, we were in a staff meeting – I was in a relationship – I was not out looking for my future spouse, let’s just say that.  Anyhow, the following fall, we spent a lot of time together and became fast friends.  While some of his quirks drove me up the wall (and still do some days… the feeling is mutual, I’m sure), some things about him stood out to me in the best way.  There was a night when we made a run to Kroger, for example.  It was cold and rainy, dark, and I was in a hurry.  When we got out to the parking lot, there was a couple with their hood popped open whose car wouldn’t start.  He walked over to them and talked a bit, then came back to ask if I had jumper cables.  I didn’t… I told him we couldn’t help.  That’s when he started approaching random strangers asking for jumper cables and continued to do so until he found a pair (short pause to appreciate that Brandon HATES talking to strangers), then had me pull up so that he could jump their car and help them on their way.  I was annoyed, to be honest – but his determination to help made an impact on me. 

Fast forward to 2008ish when we were dating and living together – both out of college at this point.  We were broke.  Broke, broke, broke (channeling my inner Renee Zellweger from Jerry Maquire here).  We had a weekly grocery budget under $50 – that included eating out, toiletries and all.  Anyhow, we were enjoying a rare dollar menu meal at McDonald’s one day when a man came in asking people for money.  Brandon bought him a meal.  We’re never sure if people who do this really need money or are trying to scam people, so we were hesitant.  When we saw this same man fishing half-smoked cigarettes out of the ashtray outside and putting them in his used Altoids tin, we knew this man really needed help.  We went out the car and Brandon drove over to Walmart.  He bought gloves and a hat, some hand warmers and a coffee mug, some ready-to-drink soups and a collection of toiletries and then a cinch sack to stuff them all into.  We rushed back to find the guy making his way over to the gas station close to the McDonald’s and Brandon got out, handed him the bag, and gave the man a firm handshake.  I’ll admit that I was kind of freaking out at Walmart as he was throwing things in the cart… remember, we had a $50 grocery budget and we needed to eat, too.  Trust me, we never missed a meal.

As for me, I’d never really seen anything quite like this.  I really hadn’t.  These kinds of occurrences would become more and more frequent as the years went by.  Sometimes, the people he’d help would walk around the building, hop into a car, and speed off… sometimes, that would break our hearts.  Sometimes, though, we’d share a meal at a picnic area with a hitchhiker who had no family and was just passing through, thrilled to have some company to eat with (even if he wasn’t thrilled with the turkey and humus wraps we were serving up). 

Four years ago, Brandon was working construction.  He’d leave a job site in Troy and drive the hour and a half each night after a long shift of hard work so that he could stand over the bed of his little girl, shed some tears when I explained to him all that had happened that day, then crash his tired body onto the tiny blue couch next to me for the night.  He’d get up long before dawn each morning to again trek an hour and a half back up I-75 to the job site and put in another long day of hard, manual labor.  He did this six days a week for four months.  Back and forth, back and forth… tirelessly making a trip so that he could spend just a few minutes at her bedside and a few minutes catching up with me before we’d crash for the night.  It was during this time that he told me how he’d always wanted to go into medicine… how when he was younger he really wanted to be a pediatrician.  And how he really thought he wanted to go back to school to be a nurse.  As crazy as it sounded to me then, I knew it would be a good fit for him.

Another eight months or so would go by before Brandon would see his first clinical rotation.  I remember him coming home almost in tears asking me if we could make a trip to Walmart to buy some sweatpants, tshirts, socks and underwear for an old man.  He said that his patient was literally wearing clothes from the lost and found because he had no personal belongings… and this absolutely broke Brandon’s heart.  I knew that day that my husband was exactly where he needed to be.  And while, we can’t always just go buy clothes for patients or afford to buy them the things that they don’t have – we can always give them our love and attention – give them the dignity and compassion they deserve.  In this, Brandon has taught me so much!

Maybe some of you have only ever seen the sarcastic side of Brandon – he likes to whip that side out a lot.  Sometimes he likes to share his opinion, whether it’s welcome or not.  But there’s another side of him… a very soft, vulnerable side that he’s probably not thrilled I’m sharing with the world… a side that makes him a great husband… a strong father… an amazing nurse… a side that he doesn’t always share with the rest of the world.  This side of him came out in amazing ways when I watched him address his classmates during his pinning ceremony on Thursday.  He made the crowd laugh on multiple occasions… and delivered a speech that pulled at the heartstrings and moved me to tears.  I am so incredibly proud of this man!  SO INCREDIBLY PROUD!  I do not tell him this enough, that’s for sure.

In fact, when we were on our way home from dinner after the pinning ceremony, I started asking him about future plans and ultimately kind of jumped down his throat for not applying for a job that has great benefits for the long run… like retirement benefits.  But see… that’s me.  I’m the one who thinks of things like retirement and insurance and the practical things (like that $50 grocery budget in 2008).  He’s the one that’s driven by the passion to do what he loves.  And you know what – I was wrong in that.  I know that he’s not the one that’s moved by a killer retirement plan… that’s not his thing.  I look back at these pictures of him standing over Ellie’s crib… he’s the man that’ll drive three hours a day to spend a few minutes making sure this baby is okay.  That’s not practical… that’s passionate.  He’s the man that spent more than half of our grocery budget making a care bag for a homeless man… and yet, we still ate.  Me… I’m practical (emotional, yes… but practical).  He’s passionate, but very level headed.  That’s our balancing act, y’all.  So at the end of the night… a night when he killed it at his pinning ceremony… a night that was all about his amazing accomplishments… a night where we were out to celebrate the culmination of so many years of hard work on his part… I kind of blew it.  Fail.

But all of that aside, I want to share a snippet of what my absolute favorite part of his speech was.  This was a part after he’d made jokes about not heeding the warnings of the professors and how many days and nights were pushed through with the sheer force of determination and massive amounts of espresso.  Then he said:

“Then, there were the nights where no amount of caffeine was going to pull us through and we had to pick up another one of our nursing school survival tools: Our list of ‘whys’.  As in, ‘Why in God’s name would I do this to myself?’

My list started with my children, but particularly the strongest person I’ve ever known: my daughter.  Standing three-foot tall and thirty-two pounds, she’s the epitome of determination, strength and probably one too many curse words for a four-year-old vocabulary (I may have had a part in that).  During the longest of her inpatient stays, four of the first six months of her life, battling the increasingly debilitating effects of a congenital heart defect, she taught me more about life than I had gathered in the twenty-nine years prior.

It was also during this time that I added more ‘whys’ to my list: Austin, Khloe, Jaxson, Jack Jack, Dominic, Tillery, and countless others.  Reluctant tenants of the Ronald McDonald House, our families would share so many tears, laughs, and even a humorous dream of the ‘complicated kiddos community’ we would one day form – I was designated to be the nurse.

Though distance has separated us, and some of these little ones remain with us only in memory and spirit, these kids, their families, and the incredible nursing care provided to them continue to be a part of what pushed me into nursing – and what would drag me through when I wasn’t sure I was going to make it.  To be able to care for incredible souls like these – that is the dream I long for.

So, I challenge my fellow classmates: In those moments where you think you’ve given all you have and start to question if nursing was the right choice, re-evaluate YOUR list of ‘whys’.  For the premature newborn struggling to breathe with lungs that aren’t quite ready, for the newly widowed husband or wife of the hospice patient who’s finally resting peacefully, for the children dealt the difficult hand that need every resource available to live their best lives – always remember your why.”

I don’t think I need anything more to close this out with… I think his words are perfect.  And I think it’s safe to say that he’s already a great nurse… his heart is in the right place… and this is absolutely the right career for him!  Proud of you B!

Rocking the mic!

Pinning :)

Proud family/cheering section... only PART of the cheering section... Beech, Sheryl, Denny, Tiffany, and Whitney were also there.  This was just my early shot when I was trying to entertain the kiddos.

Throwback to 2014 - a very tired man looking over his very tiny Bug.

Bargaining: the future is still bright for our children

Let me start by introducing you all to something my colleagues and I are all too familiar with: the reaction roller coaster (allow some time for eye rolls from all Health+Fitness employees).  For those of you that aren’t part of my work family, this may be a new concept to you.  Let me give you a quick synopsis:  when presented with change, we all go through six different stages in our transition as we “embrace” the change… and we can progress through these stages at our own pace, even slipping back and forth along the slopes of this model.  The stages age: Denial, Anger, Betrayal, Ugh, Bargaining, and finally, Acceptance.  When late last week, a large school district in our county announced that they would be pulling their support of our county preschool program back to an in-house program, taking all of the kids on IEPs out of this county preschool program back into their district without having any details or plans ready to present on this topic, my reaction sped past Denial, and festered on Anger for at least 24 hours.  I was absolutely HOT about this.  Since then, I’ve had some time to think about exactly how to react and how to explain to the community what this actually looks like from a parent of a kid on an IEP.  So I’m not here to point any fingers or place blame.  I’m simply making this post so that those of you on the outside understand what DOES happen to kids on IEPs all over our state… and what we’ve come to know here in Shelby County.  And finally, I’ll give you all a glimmer of hope – teaser alert:  I’m solidly standing on “Bargaining” right now.  I don’t see myself moving past this, though. 

First, let me share a few stories of what is perfectly acceptable outside of Shelby County.  I’m not saying anything bad about these situations, but I don’t think parents in Shelby County know how different our situation is here.  For my friend living in an adjacent county, she brings her son (on an IEP) to his half-day preschool and they set goals just as we do.  She’s been told on multiple occasions that she should be conservative in her goals for him because holding the therapists accountable for meeting those goals seemed tough.  On top of his half day preschool, this family takes this little boy to an off-site therapy program at a local hospital for 2-3 appointments each week.  They also hire a private physical therapist to come out to their house to give their son additional PT because what he’s already getting isn’t quite cutting it.  Over the summer, this family has their little boy enrolled in another private therapy program that costs the family about $300/ month.  This is a healthy, good example.  This is a little boy that’s doing well and has parental support that is fighting like crazy to keep him on pace with his peers.  But were you keeping track of how much of his therapy had to be done outside of school hours?  How much of the therapy his parents were transporting to and from?  Almost ALL of it. 

Here’s what’s different at Shelby Hills: Ellie goes to preschool half days and is transported to and from school (I know that not all kids qualify for transportation… but some do).  Ellie gets 1:1 sessions of Occupational, Speech, and Physical Therapy every week.  She also has sessions where OT and ST push into her classroom and do sessions for her entire class (twelve kids) so that they’re all learning key concepts together and they have gym together as a class where they practice specific things worked on in PT.  Now that she’s out of Early Intervention, she does not have therapy over the summer, so we do have to supplement there… and we’ll likely take the same route as the family listed above next summer with the specialized therapy – but for the nine months of the school year (and through all of the Early Intervention program), we never had to go to a single outside therapy session.  And the note on IEP goals: when we sit through IEP planning and meetings in the spring, I’m sometimes shocked with how aggressive the goals are that Ellie’s therapists are setting for her.  However, these are people who know her very well – they work with her every week (no contracted out, rotating faces here).  As for this year, she’d met all but one of her IEP goals for this school year by the time we met for our first parent-teacher conferences.  While many programs would check the box as complete, Shelby Hills said, “Okay… let’s set the bar higher.  She can do so much more.”  So in October, we were already revising the IEP goals for this school year and shooting higher – suggestions offered by her therapy staff.  Does this mean more work for them?  Absolutely!  Because, let’s be honest, I’m a very busy mom… we spend our free time cuddling and playing… not practicing walking up and down steps.  The credit for Ellie’s success belongs firmly in the hands of those therapists who know her well and push her a little further each and every week.

Does the state mandate that Ellie have 1:1 therapy sessions?  Nope.  Does the state mandate that her class size in Shelby Hills only have 12 students in it?  Nope.  Here’s another fact:  Shelby Hills has a 1:1 ratio of typical and non-typical students in their classrooms.  So in a class like Ellie’s, there are six kiddos with some form of special need (likely on an IEP) and six more kids in that classroom that have no special accommodations (typical learners).  This classroom has one teacher (holding a master’s degree in special education) and a paraprofessional.  Some classes have additional aides in the classroom, too.  So the ratio of teachers to students is no higher than 1:6.  That, my friends, sets these kiddos up for plenty of individualized attention and success in their most formidable education years.  Do you know how many kids on IEPs CAN be in a classroom?  I think it’s 20.  If Ellie were in a classroom with 20 kids on IEPs, I cannot imagine that she could even focus, let alone progress at a noticeable rate.  And in case you’re in our shoes and pushing for full inclusion in kindergarten, it’s crucial that Ellie sits in a classroom where 50% of her peers are typical kiddos.  This benefits both the typical and non-typical learner.  I can shove studies down your throat on this if you want… but seriously, just trust me on this.

I have another friend who I met while attending a class on how to enhance the educational success of children with Down syndrome.  In talking with this mom, she told me about her son, now in first grade, and strictly in a special education classroom.  When she started explaining how this happened, she said that when the district came out to assess him for preschool (this is called an ETR: Evaluation Team Report), they “couldn’t recognize American Sign Language as a legitimate form of communication”, so they rated him so poorly that he wasn’t able to attend a preschool classroom with typical kids and as a result, wasn’t able to attend kindergarten in an inclusive setting, either.  This mom went on to say that at the time of the ETR, her son was not quite 3-years-old and knew over 200 words in ASL.  And they said that he couldn’t communicate.  I looked at her with what surely was the most horrified look in my eyes.  Ellie was three at the time and signing about 150-170 words… communicating fluently with us through sign.  Kids with Down syndrome are generally very late talkers – Ellie especially so because she spent so much time completely silenced by her trach.  We worked our tails off learning sign language and teaching her as much as she would pick up… and boy, did she pick it up.  At three, when she finally started to sound out a few words with her mouth, we kept signing, but let the ASL drop off a bit.  When we enrolled in Shelby Hills, Ellie was assigned to a classroom with a paraprofessional that can fluently speak ASL.  She was literally speaking sentences in ASL to Ellie at open house… I was in tears.  Instead of closing that door on us… and putting us in the position that this other family was put in… they made arrangements so that Ellie could thrive.  Furthermore, Ellie’s class learned to count and fingerspell the alphabet.  Her classmates all learned enough ASL to communicate with her last year.  That’s incredible, y’all!  Incredible!  I’m still heartbroken for the family whose son’s vast vocabulary was written off and they were told that ASL couldn’t be recognized as a viable form of communication.  But the reality is… this stuff happens… more often that you’d ever imagine.  That same district would never tell the parents of a child with hearing impairment that same thing, I guarantee that… but for whatever reason, they felt like it was okay to say to a family whose child had Down syndrome.  Side note, that little boy is talking fluently, just like his peers, now… but is so far behind his typical peers and has never been in a classroom with typical peers… so his parents aren’t comfortable making the transition out of a specialized classroom.  Heartbroken.

I have stories like these for days.  Stories where other districts were working within the state guidelines… or justifying themselves just enough that parents felt like they didn’t have other options… and the services rendered were not up to par with what we’re used to getting at Shelby Hills.  Can I share just one more story?  This is a story from right here in Shelby County… but not from preschool.  This is a story about the dedication of staff at Shelby Hills (someone on staff that works with both Early Intervention and Preschool).  There’s a family in our county who has a little one who was doing great with therapy… but wasn’t growing much at all.  This little dude just wasn’t getting any bigger, despite lots of efforts from therapists and his pediatrician.  He was referred to a specialized feeding team at Cincinnati Children’s hospital.  When his mom told his Occupational Therapist about this appointment, the OT asked if it’d be okay if she came along.  For those of you not from our area, we live a full two hours away from Cincinnati Children’s hospital.  And for those of you confused at why OT would want to go, when babies qualify for Early Intervention services, OT usually serves as a feeding therapist for a long while, if needed.  Basically, this therapist was offering to drive all the way down to Cincinnati to attend this appointment for her patient so that she could meet the feeding team and make sure that she was on the same page as the feeding team.  She could share information with them to let them know what they’d tried from an OT perspective and they could give her pointers on how she could customize her treatment plan to better serve this little guy.  If you’re not completely amazed right now, you weren’t paying attention.  This OT went way, WAY out of her way… far beyond the expectation of her job role to make sure that she would give the absolute best care to this little boy and his family.  Why did she do this?  Because it’s not about her at all.  This same therapist came out to our house in the evenings when she was doing feeding therapy with Ellie because we were struggling with how Ellie was eating for one of our nurses.  She worked late and flexed her schedule to make sure that she was able to meet with our evening nurse and get Ellie’s feeding straightened out for us. 

So, are we spoiled in Shelby County with the service we’ve gotten at Shelby Hills?  Without a doubt.  We are absolutely spoiled.  But I don’t think all of the parents here know this.  I don’t think they know what losing a resource this great actually means.  But on the flip side, do I think Ellie deserves this kind of care?  You can bet your butt I do.  Without a doubt.  I’ve already been asked why I care so much about this change… after all, Ellie only has one (maybe two) more years of preschool left and we’re not even in the school district that’s impacted by the recent decision.  I care – I care with every fiber of my being that all of the kids in the county have the care that they need – not the minimum level of care that they have to have – but the amazing, over-the-top level of care that they really do need to thrive in life.  Even if Shelby Hills were able to function at the same capacity even after this change happens (which is unlikely), I still care so deeply... because it's about those kids.

The problem with some district officials, I think, is that I’m not sure that they look at Ellie and really SEE her.  When you look at Ellie, do you SEE her?  Not just as a cute kid with a disability.  Not just as an obstacle in the classroom.  Not just as a means to an end.  Certainly not as a solution to a budgeting concern.  Not as a dollar amount that the state will send to your district for offering her a certain level of services.  Do you instead see her as a person full of potential, hopes, and dreams?  Do you see her as someone who deserves MORE?  More than the minimum necessary?  More than what the state mandates?  More than a few minutes a month of specialized therapy? 

I can promise you that the staff at Shelby Hills not only sees her as a child with hopes, dreams, and potential… they treat her like a child who has opinions and a voice that matters.  They treat her like a child whose complex history matters, but also as a child who is capable.  Capable of academic success and real friendships with all of her peers.  Worthy of dignity and an abundance of attention.  You see, parents… especially parents who are directly impacted by this change – those who ARE in the district impacted… the good news here is that you have a choice.  You have a choice when you sit through your IEP meetings.  Your child has a right to attend school in the Least Restrictive Environment.  So while this is all very daunting.  Know that you have power – you have the power of bargaining here.  We can ensure that our kids still get the utmost care – the level of acuity they deserve.  When you’re staring down your first (or next) IEP meeting, ask yourself the following questions.  If your district isn’t able to check the boxes in the way you feel is LEAST RESTRICTIVE for your child… then you have the right to keep your child in the school that does provide these things.  As parents, you absolutely know what is best for your child. 

•           What is the teacher to student ratio in your classroom?
•           How many aides are available in each class?
•           What resources are readily available for non-typical communication?  ASL trained staff/communication devices, etc.
•           Is your classroom handicap accessible?
•         What is the ratio of typical to non-typical kids in your classroom? (remember, if you plan to do full inclusion in kindergarten, this is a very BIG deal)
•           Is there a nurse available full-time in the building? (this is more of a concern if your child has any special medical equipment/needs… this is a biggie for us)
•           How many hours per month will my child have of 1:1 OT, PT, and Speech?  (not combined therapies… and NOT combined minutes with other students… that’s important)
•           What kind of modification ideas do you have for daily tasks? (I have some examples of what they’ve done for Ellie if you’re interested)
•           Ask to tour the therapy rooms to make sure the environment seems engaging and age-appropriate.
•           Will my child be working with the same OT/PT/ST throughout the year?
•           When/if my pediatrician orders additional therapy hours, how will that be handled in the school?

This is not an exhaustive list… just some ideas to get you thinking ahead of time.  I am picking the brain of a friend of mine who is a lawyer specializing in inclusive education advocacy to create a full list of things you may want to think about.  Contact me if you want a copy of that to use as you prepare for your IEP.  I do plan to post again on the benefits of an inclusive classroom.  Until then, friends, thank you for reading along and thank you for hanging in through this lengthy post.  And know - I haven't even scratched the surface on the list of ways that Shelby Hills, Wilma Valentine, and the Shelby County Board of DD has gone far above and beyond their call of duty for the families in our county.  Keep fighting the good fight.  Much love!

Update on my 20k/day Challenge

So it’s now been two weeks since I posted that I was challenging myself to walk 20,000 steps per day.  So far, I’m not doing too bad.  Here’s a recap of how it went down:

Step 1: This was the week before I started walking more.  This was the week where I was inspired to work on cleaning up and purging junk out of our house.  That alone was energizing and motivating, but of course, didn’t change a darn thing about my waistline.  But this was such a refreshing task, that I wanted to share it with you all.  I happened upon Allie Casazza’s blog and she had a 3-weeks to Minimalist Motherhood link at the top of her page.  My blog is in no way/shape/form sponsored by anyone, so this is strictly a plug for something that I found useful and wanted to share.  I did not purchase the package when I went through the free class – maybe I will later, but for now, the tips in the webinar were enough to get me rolling.  The thing I loved about it was that it wasn't so much about the stuff.  It didn't tell me that I need 5 shirts and 2 pairs of shoes.  The focus was on thinking about what kind of a mother you wanted to be... what kind of mother you deserved to be.  And for me, that was the ticket.  I’m far from perfect on this minimalism deal… but I’m a lot better than before.  No longer am I trying (and failing) to play catch-up.  This is silly, but one of the best things is that I’ve sworn off laundry all weekend.  Now, if they kids say, “hey, let’s go to the park”, we go to the stinkin’ park and can do so without feeling like I need to be doing something else.   Being able to go to the park or invite someone to stop over without freaking out about the house... that's some serious freedom... and certainly helps me be more of the mom I want to be.  So for me, step 1 was about cleaning up my space.

Step 2:  This is where I started actually USING my desk treadmill.  I wrote about this a bit earlier, but it was really my first week where I cleaned up my routine.  It was nice to add another level on top of my clean space… I’m not at all a person who can adopt 7 new habits at once.  I’ve tried and failed at that many times.  I can start with one new thing, then slowly add more.  Maybe you’re like that, too.  Right now, I keep telling myself that if I keep adding a new layer each week or so, I’ll have all kinds of good habits in place six months from now.  So week 1 of this part was using my treadmill desk – and that week, I averaged between 14,000 and 15,000 steps a day.  Week 2 of this challenge is when I wrote my last post – challenging myself to get in 20,000 steps per day.  This took a considerably larger commitment on my part.  About halfway through that week, Brandon challenged me to drink a gallon of water a day, too.  Eeek!  To recap on these challenges:  I haven’t been perfect – that’s for sure.  I am able to get 20,000+ steps on weekdays because I spend 8+ hours behind my computer… and it takes about 3.5-4 of those hours walking at a slow enough pace that I can still type/write/speak during meetings for me to get in 20k steps.  Not too shabby.  I’m not as great on the weekends – and I’m okay with that.  I did realize that I needed better insoles in my shoes – more arch support, please!  When you add a gallon of water, you get about 4,000 steps in per day just walking from your desk to the bathroom and back – for real!  And I realized that I’m quite the sweaty beast at work now.  It’s a darn good thing I do work from my house.  I’m going through more clothes (because I cannot walk all day in jeans/capris) and when I’m off work, I’m thankful for the freedom of flip flops and to get my feet out of the socks and tennis shoes they’ve been roasting in all day.  Is that TMI?  Ha. 

Here’s the result of this, though:  my resting heart rate is down about 14 beats per minute.  Whoa!  That was a completely unintended benefit.  I don’t check my blood pressure often (because it’s never been a concern), but I can say that my high-strung hubby has greatly reduced his blood pressure by walking with me.  The first week of walking 20k steps/day resulted in a weight loss of 2.4 pounds.  Yahoo!  Remember, I didn’t do more than just that – I was still eating fast food and ice cream.  In fact, I probably ate MORE ice cream that week because I knew I was about to add a diet to the plan and I wanted to pack in all that frozen deliciousness beforehand.  That’s how I roll.  This week ended with a night out with friends – what a way to end my pre-diet week, right?  Awesome!

Step 3: Last week was my first week jumping back on the Keto bandwagon.  I know this will come with mixed reviews, but trust me, with an exercise physiology background, I’ve had more than my share of classes on nutrition.  I understand how my metabolism works… and no, not just from hokey websites and such.  I researched ketogenic diets for about a year before I tried it for myself.  I tried it in March this year – but only made it about two weeks before I lost motivation.  At that time, it was just me… without much accountability… and dang it, social gatherings made it hard and I just gave up.  I will say that my family loved the meals I was making and I felt pretty darn good after the first three days, so I knew that when I added the diet layer to my new routine, keto was my go-to.  As someone who’s had a weight complex (with either real or perceived concern) since high school, I’m certain I’ve tried just about everything.  This time, my husband was on board to try this with me.  I pulled a ton of recipes from dietdoctors.com and continued to read and absorb as much about this lifestyle from others I could.  If you have Netflix and totally dig documentaries, watch “The Magic Pill”.  This is the film that solidified this diet for me.  The results for brain function and development were incredible.  We have one kiddo with crazy ADHD and if we can stabilize some of that with diet, I’m in.  And Buggy – if we can give her brain the clarity it needs to function at its highest possible level, of course I’ll do it.  Now – Brandon and I are on a strict ketogenic diet right now – the kids still have some grains and fruits in their diets, but we’ve eliminated some of the processed yuck they were eating before.  So far, no complaints.  I take that back… the boys complained that we didn’t have Pop Tarts.  I said, “Sorry, I’m not buying Pop Tarts anymore.”  And that was the end of it.  After the first week of keto, I was down an additional 4.4 pounds.  That’s 6.8 pounds in the two weeks that I’ve been tracking weight.  That alone is enough motivation to keep me going.  The fact that I’m not hungry all the time and have freedom to function at full capacity without really thinking about food much – that’s incredible!  Clearly, step 3 is all about cleaning up my diet – I imagine I’ll be on this step of the journey for several weeks before I add anything else.  I’ll keep you posted.

I feel pretty great (although my legs are sore some days from walking so much), my house is clean – for the most part, I have more energy, I am not hungry, and I’m sleeping great.  Those are the biggest benefits for me – I’ll take any weight loss as a result, though!  So who wants to hit me up with their best Keto family recipe?  Fat bombs that are to die for?  I have some that I’m sure I’ll share, too.  Yum.

Here’s to feeling better and jumping into the craziness that is summer with a few new habits.  Here’s to staying accountable.  Here’s to taking care of myself and my family!  Here’s to being a little more like the mom and wife I WANT to be each day.