A brilliant illustrator and author recently depicted what the primary parent “mental load” is on a daily basis. While I do not live all of these depictions, I live many of them. 

The mental load of rebuilding the health and well being of a child is as exhausting as teaching the newest tiny humans how to nurse. Oo doesn’t have hunger cues. (Common Celiac problem.) She also has low muscle tone in her core due to malnutrition, so it physically hurts her to sit upright for long periods of time. (This explains why she always asks to sit on our laps to eat.) She prefers to stand to eat, which also makes sense now that we have some answers. 

When she gets hangry close to a meal, I spend a lot of mental energy encouraging healthy foods. I also need to be aware of her fiber intake for good digestive health. I also can’t offer her a thousand options, because she will have to navigate this world without them. And still during all of this great negotiation I  have a hangry unreasonable tiny human, who is just mad. I spend more of the mental load keeping her calm enough to eat. I spend my own mental load navigating land mines.

I have to teach her to sit (aka stand) and eat food, again. I have to teach her that when her body feels angry, it’s because she is hungry. Then I have to tell her that only the foods in her lunchbox (when we are out) are available. I’m now spending a lot of my days talking about calm bodies. I spend a lot of my metal load keeping bodies calm, because car seat straps, and wet bathing suits are hard for an SPD tiny. 

She has a physical next week, and we need a weight gain. She also had blood in her stool yesterday, and the GI nurse basically said welcome to Celiac. So, I’m learning, and it’s a lot of my mental load. 

You can stop reading at any point, but apparently I have a lot of topics to cover. 

I quit bedtime, again. This mental load is to huge for one person. I’m focusing on the healthiest foods, screen free living (although we went to the movies, failing) during oppressive humidity, running her new found energy, keeping her calm for camp at school camp (another new), and making sure her days are perfecto, while practicing all the great OT. #slideone parentening. I can’t do bedtime. So she currently gets to lay on my lap after teeth brushing and stories. She falls asleep in 7 minutes or less, I’m calling it a win. 

I walk a daily battle field desperately trying to figure out what is reasonable, and what is Celiac and SPD.

Oo proudly carried her own candy into the movies today. The poor teenager at the counter tried to stop us, and I just said she has Celiac. The teenager let us pass without issue. Then she had a meltdown about movie popcorn. 

I challenge a world, the whole Catholic Church, and family that struggle with this reality so therefore dismiss it as untrue. As a result, I’m left with the mental load. 

As we struggle to recoup from lost wages, and additional ever mounting medical expenses, and even more expensive groceries, I have had my own privilege on my mind. It’s been a nagging (and at times gut sinking) thing to wear. We want to all believe we earned our privilege, but likely we didn’t. Our privilege was assigned to us at birth by the class, race, and gender written on our birth certificates. 

I came from soup kitchen poverty, from food stamps, from spotty health care, unstable housing, and an immigrant “bootstrapping” mama, who in today’s political climate could not have accomplished what she did. 

Today, we live a barely middle class existence that is soaking wet in privilege. 

What privilege looks like when you tiny human is sick. 

Privilege looks like this.

• I was provided enough time home with my tiny humans during their early years to know them better than I know myself.
• The confidence to know something is beyond toddler behavior.
• The ability to have a comfortable and flexible job to leave work at any time for doctors appointments.
• The ability to pick your pediatrician.
• I own a reliable car to drive to every appointment, and they are all over the state. 
• I speak the same language as our physician.
• I have the education to know how to speak their ‘expertise’ language (so much privilege in owning an education).
• I have the ability to pay for co-pay after co-pay. (Kinda… it’s a lot, but access to credit is a privilege.)
• We have employer provided health insurance.
• I have a cell phone to make endless phone calls. 
• I have access to the Internet to Google every number I need to call.
• I have been trained at a top tier institution how to research to find all of the information I need.
• My dad is a lawyer, and could quickly dictate the lines we needed to use to navigate health insurance. 
• I have been trained on how to coordinate large projects and implement change. (more education privilege)
• I am white, speak English, and own nice clothes, which means providers listen to me, and I’ve been trained to be professional. 
• I know how to advocate. (education privilege)
• I can access any grocery store I want to, because I own a car. 
• I can (for the most part) buy whatever we need at that grocery store.
• I do not need help buying food.
• I have an amazing support system. 
• There are two actively involved parents in my home.

I doubt this list even scratches the surface at the amount of privilege I own. I sometimes get angry at the traces of poverty left on my skin. They are present in terrible teeth, student debt, and a lack of any real savings. They are present in the absences of a realiable white collar network to tap into for opputtunities. I do still sometimes get angry at my own poverty, history or not. 

Yet, I’ve worn my privilege loud through this Celiac journey. I have never been afraid to get angry to find care for my daughter.  I’ve never been afraid to ask for help. I have been more informed than physicians at most apppointments,  because I can read and research. That is an anstonishing amount of privilege. 

I’m owning all my privilege, or trying to. Truthfully I share this journey to hopefully help even one soul find what they need.

Next steps are to figure out how to provide our local food pantry with safe food options for children in need.

She now chats in the car. We have full conversations about whatever is on her mind, and there is no screaming about car seat straps, or getting in the car, or life in general. My goodness, I soak in her calm. I love hearing her words. 

I listened as she poetically described her dreams, her friends, and her favorite lake days. I get that for a lot of parents this may seem so normal, but Oo only screamed at us before, everytime we put her in the car she yelled. To listen to her chatter is blissfully obnoxious. 

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She doesn’t hurt anymore. 

I read a lot. When her behaviors became super challenging, I employed every technique the experts told me worked. They work now. They didn’t before… it was terrible. It didn’t matter how dedicated to the cause I was… breathing was hard. Now I reminder her to practice “calm bodies” and she does! And we all find peace. 

She doesn’t hurt anymore. 

She has more energy than we know what to do with. She’s now non-stop, and the world is hers. We are naturally exhausted. We went from constantly over tired tiny human (due to anemia) to a child that hates bedtime. It’s a welcomed change, alibet exhausting. 

She doesn’t hurt anymore. 

A part of our new normal is figuring out her energy levels – insane I might add, but she’s running with the dog, and swimming in the lake she was afraid of. Tonight she found conflict with her BFF. But she was so damn rational about the entire conflict. 

She doesn’t hurt anymore. 

I spent endless hours worrying about how much attention and touch she had in a day, because I believed them to correlate directly with how our day would go. Now,  she just says “I need a snuggle.” And then after she plays. 

She doesn’t hurt anymore. 

I wish I could accurately explain what it is like to watch a tiny human struggle with life. How you believe you have to navigate life for them, because everything is a challenge. How I was so scared for her at every moment. How I worried. How she woke up struggling, and went to bed exhausted beyond belief. I wish I could explain what it is like to watch a tiny body not thrive. How I wish I could explain what apologizing for her felt like. How I felt the worst guilt, that I did it all wrong… that I loved this sweet baby wrong. 

She doesn’t hurt anymore. 

I noticed today that the pink circles around her eyes caused by malnutrition were gone. I noticed that she ran until bedtime. I noticed that she rationally accepted bedtime. 

She doesn’t hurt anymore. 

This diagnosis sucks, but I’m so grateful for treatment. We have planned the most epic gluten free 4th picnic. She will swim. She will eat. She will play. She will thrive. 

She doesn’t hurt anymore. #beyondceliac #celiacawaerness #letthembelittle 

It sounds ridiculous to shout from rooftops that my tiniest human sat for dinner tonight, and even ate food.  She actually hung out with us, when food was involved, and relished in giddy happiness that we were soo stupidly delighted she decided to join us. (Previously she was invited and always opted out.)

When I said goodnight today, she told me I didn’t even scream at her today…. (enter all the great guilt). I didn’t. This sweet tiny human had a great day, and so did I. (They correlate, shocking I know.) We are healing. 

I wish I could accurately articulate what’s it like to not be able to function when your baby is sick. I didn’t pay a single bill over the past 6 weeks, and it wasn’t because we couldn’t pay them, but I didn’t even have the strength to “submit payment.” (FYI – when you actually get your shit together, just call them, and they are all super kind, and waive late fees. The world understands, sometimes.) I just couldn’t process life with a sick baby. 

She’s healing. She’s thriving. #gf4lyfe let’s do that. 

I wish I was talented enough to write about when you get your best tiny human back.  I wish I could articulate what it’s been like to love her… all of the moments that her pain left me feeling helpless… I wish I could hug every mother whose baby struggles… and say “I know.”

We are healing. We have gluten free bagles and muffins.

I’m a mama, and I have had so many bad days. And I saw my Disney baby today reclaim her love for life …… and it makes me weep. 

She’s basically the most awesome. She loves her siblings and friends. She loves to climb, play, run, jump, skip, and swing. I need to make sure she always loves these things. Her Disney sparkle is an added bonus. 

There are several truths that need to be documented to fully explain this post. 

• We are six days Gluten free. (Our entire household is now gluten free and that’s not a small feat.)
• We are seeing positive physical and psychological changes.
• Our kitchen has been sterilized with chemicals that I don’t love. 
• We have successfully attended a social event. The hosts made Oo her very own GF substitutes and provided her (and me) with amazing support, love, and comfort as we navigate our new normal. 
• The tiny humans have been watched by friends and family. Friends and family who I know will protect, respect, and support our new normal to keep Oo safe. 

It’s not like we are not doing this. We are. We are in it. We are figuring it out. I downloaded 504 forms today, and refined a GF muffin recipe. 

I have no idea how to navigate a potluck. I have no idea how to navigate hot dog buns, and a table full of treats she can’t eat. I have no idea how to navigate this potluck that is being hosted in a place she feels safe. I have no idea how to explain to a three year old that her friends can have everything that is offered, but she can’t. 

It’s a potluck, and I have no idea what substitutes to offer, prepare, and bring. What happens if I make GF cupcakes, but the potluck brings brownies that all of her friends will eat? How do I become the mom that follows her around, even though that’s a role that I think stifles growth, independence, and confidence? How do I navigate this? 

A huge part of my belief system asks students everyday to dig deep, find grit, find perseverance, and find tenacity. And yes, that’s all awesome. We need to teach this tiny big kid to self advocate; when was the last time you attended a party and said no to cake? Now imgine you are three years old. Now imagine all of your three year old friends get to say yes. Now imagine this is all taking place in a location the grownups in your life have told you is safe. Again, imagine you are three years old. 

I have dedicated my nine plus years of parenting to affirming tiny human security. I never let them cry it out, and I validate feels. 

How do I ask a three year old to develop the confidence to protect her body, in a place she feels safe, and still survive saying no to everything her friends (and the people we have taught her to trust) get to say yes to? 

I’m just not sure how to do this yet. I will learn, but I’m kinda questioning do I really need to learn this impossible during week one? 

Disclosure: Different families make different choices, and I’m only sharing what works for our family. 

It’s been a bit crazy around these parts, but it’s nice to move into a proactive role rather than be stuck in a survival fight or flight way of living. I was chatting with a friend who also closely moderates screentime with her tiny humans, and she used the phrase “media hangover.” I knew exactly what she meant. A media hangover is the attitude that a tiny human demonstrates after being asked to turn off a screen. It varies in severity. After video games, it’s the worst, and translates into genuinally creative, playful, imaginative tiny humans being bored, and saying the dreaded “there’s nothing to do.” It’s the worst and makes me super cranky. It also makes them super cranky. 

One morning I watched the three year old yell at the PBS Kids game app in frustration. And I was like absolutely not. We do not get to yell at iPads. (There enough things to yell at, so I removed the app.) The big kids play Animal Jam and Minecraft, and its torture to ask them to put them away after they have been playing. There is genuine anxiety for “one more minute.” I was over it, before it began, and removed the apps. I also have pretty strong opinions about fantasy violence, and competition, but that’s a different post. 

So now, with pretty free range choice the tiny humans can have photo shoots and make videos (because creating and imaginative play), or listen to music, podcasts, or audiobooks. They can also use the Kindle app, and Pinterest to look for craft and baking projects. They must ask can they use Amazon Video or Netflix, but in general because other options have been made available they are fine with a no. Olivia also uses Kids You Tube to learn ukulele, and learning music is pretty rad. (I strongly encourage the kids You Tube app, the regular You Tube app is filled with so much violence.) 

I have no idea how this will work in the future as we navigate more screen challenges, but for now, some choice seems to work for our family. I’d love to know how your family is navigating screens.