Wearing Privilege, Choosing to Use It, and Everything You Know You Need to be Grateful for. 

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. 

Concentrating on her water work. Quality childcare is a privilege.

I am a white, over educated, cis-gendered female who is married to a white cis-gendered man. That’s a lot of privilege in one sentence. We also own our home.

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.


I Realize I’ve Said This Before, But It’s Really Important. 

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. 

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 

The Overwhelming Feelings of Healing 

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. 

Occupational Therapy helps her navigate this world.

A long time ago we said Oo had “Disney” in her eyes. She saw blue birds when we saw rain. She was our Queen of The Fairies. (Oonagh in Gaelic means Queen of The Faires.) What breaks my mama heart is we lost this fairy to fucking Celiac, but we are getting her back. She’s growing stronger every gluten free day…. I’m so ready for this sweet fairy, and I’m so ready for her to feel “Disney” happiness again. 

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. 

When A Potluck is as Challenging AF 

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? 

Saying No to Video Games (And Other Summertime Screen Challenges) 

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. 

21st Century Parenting

The thing is I love my screens. I’m not in a position to be a complete hypocrite about them. However, there are so many fun ways to use a tablet that cause a significantly reduced media hangover.

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. 

Sometimes a Positive Still Sucks 

Whelp, the news we needed and equally dreaded came back today. 

Oonagh’s small intestinal biopsy is POSITIVE for Celiac Diesease. 

We knew this. In our hearts we knew this. Yes, I’m really grateful for answers. I’m relieved my gut never let go of knowing something was wrong, and not giving up until I had the answers… I’m relieved that we have amazing providers who went head to head with us against the insurance companies… I’m relieved she will be okay. I’m relieved that every concern I had for her can be explained with this diagnosis.

But no one wishes a life long disease for anyone they love. No one is grateful for this. And while I’m thankful to have an answer, this answer sucks. 

Auntie and Oo

The gluten free lifestyle that needs to happen is not what makes my heart sad, whatever, we will do that. It’s like a syllabus of assignments to follow, I’m good at that. It’s everything else…

My heartache is for the impeding lab work in 3 months (it took 4 techs to hold her down last time). Her first mom-free play date with her own food. Every birthday party with her own cupcake. Every movie theater experience. Every stupid comment that suggests “a little gluten is fine.” Every first date she will need to disclose her GI health. Every party she will be BYO… 

My heartache is for how this world completely destroys girl’s and women’s confidence, especially surrounding their food choices, their bodies, and their self worth. 

My heartache is for everything that will look different. There will be no more munchkins.. and there will be no first tasty beer at a great brew pub on her 21st… (something my dad did with me). 

My heartache is for all of the stupid comments people will make, someday I won’t be there to deflect them. My heartache is for the work of tremendous self advocacy I have to teach. 

Today my heartache was for bagels… I know it sounds silly. Many of us choose not to eat bagels, but Oo didn’t get to make that choice. So I spent a gazillion dollars in fancy gluten free flour and made her some. 

Gluten free bagels for my bagel loving Celiac girl.

On the plus side, because of the diagnosis the insurance company doesn’t stand a chance. 

#beyondceliac #celiacawareness #noitsnotanallergy #glutenfree

A Mother Knows…. 

Continuing the chronical of #cantmakethisshitup…. 

Phone calls ended at close of business on Friday without an insurance auth, and me weeping to a PA on the phone. I was in tears as I explained this sweet baby is getting more sick, and I don’t have numbers for you, and I never went to medical school, but I’m her mother, and I know.

The PA suggested having her reevaluated by our pediatrician to document worsening of symptoms for the inevitable insurance appeal. (That’s a thing folks, make sure we know just how sick she is, because we can’t actually believe you.) 

The pediatrician was flabbergasted we were going through this. He basically said “tell me what you need me to write down.” Well, we didn’t have to get creative. This sweet girl has lost weight this month. (Tiny humans are not suppose to do that.) Her iron levels have dropped, again. I knew this because I’m her mama, and I know my tiny humans. 

While she rocked out to the new Paramore album on the way home, I quietly cried with sunglasses because she is so not okay. I knew this, because I’m her mom. 

Our surgeon personally called me twice to verify this mornings results, and to ask me what she needed to write for coverage. She is committed to healing our tiny human, and is equally flabbergasted at the insurance nightmare. She was kind and committed to helping. Our providers are in it with us, and that feels reassuring. 

When your baby is sick, there is absolutely no force that can stop a mother. We will take an enormous financial risk on Wednesday morning, and have the procedure done. I’m living the American Dream on borrowed funds, anyway… what’s one more line on the spreadsheet? What’s one more line when your whole world is at risk? 

A friend’s cat. We probably need a cat now. It brings her joy.

I’m finding solace tonight in two things. First, Wednesday morning will begin the long road to healing for my sweet baby girl, and we will stumble through our new normal together, but only until we figure out how to be super badass at it. We got this, sweet Oo, we got this. Second, the insurance companies haven’t met me yet. Advocacy is my job. An appeal process doesn’t even scare me if I can actually enter one. And once my sweet little is healing I will be a force to reckon with. A dear friend coined the phrase “don’t fuck with Finn.” It’s not a wise choice to try. I will advocate for my tiny human until every resource in my privileged existence is exhausted, and then I will go find more resources, and try again. 

I asked the authorization manager at the hospital today was this going to be a nightmare to go through. She assured me it would be, but was confident we would win. When I replied “bring on the nightmare.” She said with that attitude they don’t stand a chance. 

Nope, no they don’t. My largest and most important job is to keep my tiny humans safe. They just don’t know how seriously I take my work. 

Every Step of This Journey is Dripping with Insanity 

I use to worry about this baby a whole lot less than I do right now. I spent way too many hours last night watching videos, and looking at pictures of her past three and a half years. I can now pinpoint the month that her face began to look more tired… and my goodness, sweet baby I’m so tired too. 

Well it was another day of torturous phone calls that ended in a spiral of madness and incomprehensible insanity… all of it will prolong her pain.

One year ago today….

Technically, the procedure that we need doesn’t require a pre-authorization according to our health insurance. So, technically there is nothing that YNH can get pre-approval for. (This is important.) 

However, YNH pre-ensures coverage because they want to get paid. 

Insurance told YNH they will not cover procedure, and not because of the procedure type, but because of the diognostic codes used to specify need. The only person who can change diognostic codes is ordering physician – who is not back into hospital until hours before surgery. 

It gets better…

The insurance didn’t technically deny procedure because there’s no formal pre-auth needed, and so no one had to technically deny coverage. As a result,  there is no formal appeal process we can begin to engage in. 

Yes, follow that insanity. 

YNH calls HBHC to double check coverage, but doesn’t actually need pre-auth.

HBHC says no pre-auth needed, but we won’t cover it.

Me: Well, I want to appeal that.

HBHC: You can’t because there hasn’t been a formal denial. You can technically still go have the procedure that doesn’t need a pre-auth, and then formally appeal when we deny coverage. 

Me: So put my family at a financial risk? 

HBHC: Well you still have the procedure and then appeal. 

We could self-pay and tell YNH that we don’t have insurance, and receive care for only several thousand dollars, but if we do that we can never appeal to insurance. 

Or we can risk it. Get procedure done for 3x the non-insured rate, and hope we win appeal process. 

Or cross everything that the doctor gets more creative with diagnostic codes, hours before scheduled surgery. 

Or when we inevitably miss original procedure date (6/21) the doctor figures out a way to squeeze it in before they leave for sabittical on 6/30 (yes, let’s add to this insanity). 

Meanwhile, we agonize over the health and safety of a super sweet tiny human. We get to sit with worry and panic, because everyone leaves at 3pm on a Friday. 

I Don’t Speak Health Insurance

Documenting the pure insanity of #youcantmakethisshitup

It took 1.5 hrs and 13 phone calls this afternoon to learn that no one working in health insurance or health care communicates with anyone.

At 2:46 pm we received word from doctors (YNH) that Oo’s procedure will not be covered by our health insurance (HPHC). They quoted us a ridiculous fee-for-service price. (Half the value of my house kind of price.) 

Between the 2:55 and 4:46 I made 13 phone calls. 

Call #1:HPHC member services informed me a request for services was never made by YNH.

Call #2: YNH to reach out to original provider who informed us of denial. She explains that not only did HPHC deny coverage they denied additional means to receive coverage including extra letters of medical necessity and peer to peer (doctor to doctor) review. 

Call #3: HPHC claims. Can’t file appeal, because they say request for service was never made.

Call #4: YNH seeking women who made original request for service. (She is gone for the day.) 

Call #5: HPHC Member Services request supervisor who tells me same thing, but does suggest calling YNH med records department. 

Call #6: YNH Med Records get read detailed accounts of three phone calls made from YNH to HBHC including procedure codes (42382) and diognostic codes R10.8 and R108.4. YNH tried both to get HPHC to cover procedure. 

Call #7: Patient Advocate line at HBHC. Learn that 42382 will be denied. But other diagnostic codes might be able to be used for possible approval. 

Call #8: Call YNH back get receptionist. She explains I need to call provider services line at HBHC.

Call #9: HBHC provider service line refuses to speak with patients and transfers me to member services. Ask for supervisor. 

Supervisor is sending letter to YNH that will explain different diognistic codes to use for potential coverage. (The letter will take 3-5 business days.) Supervisor also says to call back provider line, and don’t tell them you are a patient (I’m not the tiny human is) and immediately ask to speak with supervisor.

Call #10: Back to HBHC provider services. Speak immediately to supervisor who informs me that 42382 is problematic, and that all phone calls between YNH and HBHC are recorded, but she can’t access them for me because I’m not a provider. I get direct contact line to give to YNH. HBHC says I can’t have anything in writing because the only documentation of exchange is in recorded phone calls, that I can’t have access too, because I’m not a provider. 

Call #11: YNH leave voicemail with direct contact information for HBHC provider services. 

Call #12: YNH med records to get this insanity documented in the notes for Oo.

Call #13: Leave long detailed message on doctors line explaining all of this, and asking for documentation of request for services. 

4:46pm: Everyone is gone for the day, and I just get to stay in this nightmare.

The irony is fucking profound. One of the reasons we have tortured Oo with gluten for the past 3 weeks is to get a positive diagnosis so continued care will be covered. The procedure we were told will be required by the health insurance company that won’t cover the procedure.