Eleanor, hand me a flag…

Eleanor, hand me a flag…

Up early, vacuuming under couches, scrubbing the stove top, reading articles, and now headed to Little Rock for a 9am appointment with the pediatric endocrinologist. 

Many thoughts and feelings bouncing around my head and heart. God, please guide us, please let us make the best decisions for Rebekah’s well-being, help us stay humble and kind, and please let my many concerns be assuaged and my many questions be answered satisfactorily. 

I don’t know that I would agree with her political views or her personal life, and I don’t know if she would agree with mine. But I certainly agree with and value many Eleanor Roosevelt quotes…

“No writing has any real value which is not the expression of genuine thought and feeling.”

“When life is too easy for us, we must beware or we may not be ready to meet the blows which sooner or later come to everyone, rich or poor.”

“I have never felt that anything really mattered but the satisfaction of knowing that you stood for the things in which you believed and had done the very best you could.”

“At all times, day by day, we have to continue fighting for freedom of religion, freedom of speech, and freedom from want — for these are things that must be gained in peace as well as in war.”

“We must know what we think and speak out, even at the risk of unpopularity.”

“This freedom of which men speak, for which they fight, seems to some people a perilous thing. It has to be earned at a bitter cost and then — it has to be lived with. For freedom makes a huge requirement of every human being. With freedom comes responsibility. For the person who is unwilling to grow up, the person who does not want to carry his own weight, this is a frightening prospect.We must all face an unpalatable fact that we have, too often, a tendency to skim over; we proceed on the assumption that all men want freedom. This is not as true as we would like it to be. Many men and women are far happier when they have relinquished their freedom, when someone else guides them, makes their decisions for them, takes the responsibility for them and their actions. They don’t want to make up their minds. They don’t want to stand on their own feet.”

“Will people ever be wise enough to refuse to follow bad leaders or to take away the freedom of other people?”

“One of the best ways of enslaving a people is to keep them from education… The second way of enslaving a people is to suppress the sources of information, not only by burning books but by controlling all the other ways in which ideas are transmitted.”

“In the long run there is no more exhilarating experience than to determine one’s position, state it bravely and then act boldly.”

“No one can make you feel inferior without your consent.”

“Women are like tea bags. You never know how strong they are until you put them in hot water.”

“Learn from the mistakes of others. You can’t live long enough to make them all yourself.”

“I am who I am today because of the choices I made yesterday.”

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Two minutes with a Toddler: Chocolate Milk, Anatomy of a Tantrum (with video)

Two minutes with a Toddler: Chocolate Milk, Anatomy of a Tantrum (with video)

She’s sweet, she’s sour. This is the full tantrum (video at bottom of blog). She’s gotten faster at getting back on track. She’s even had a few that were much faster than this one. And she has DEFINITELY had longer tantrums. 

Toddler wants chocolate milk: let’s break it down. Every tantrum, every fight at our house can be divided into these same parts–unacceptable behavior, gentle chance, a firm and predictable punishment, an apology, forgiveness, makeup. 

That’s it. It can be over that easily. You know…in theory. 

Part one–Unacceptable Behavior I didn’t get it all on video. She just woke from a nap and demanded chocolate milk in the her whiniest voice ever. No. Not a chance that I will reward that. 

Part two–Gentle Chance I explain how she’s acting and give her a chance to change her mind quickly. Sometimes it’s over RIGHT then, and we skip part three. Other times, part three is the longest step…her choice. 

Part three–Clear Punishment (or Consequences) If she chooses not to change her behavior, she will be punished–go sit on the couch. She tested me because I was filming, and she will usually test me if someone else is here as her audience…or if we are in public. 

Ideally, and theoretically, she gets ONE chance to obey. And if her mouth or body language “tell me no,” then I will go pick her up and put her on the couch. That’s “yes.” 

(But to be honest, I don’t always get up when she doesn’t obey the first time…as you see in the video. But if I’m making eye contact and I’ve told her TWICE, and she disobeys a second time…I will get up. Trust me. 

I have had to place her on the couch many times. I’ve had to catch her trying to run off as many as 12…possibly 20 times in a row, and I sit her back down, and back down, and back down…until she stays. 

Part four–An Apology She knows when she can get up. All she has to do is say, “I’m sorry.” This particular time, she chose to say it quickly. Cool. Fine by me. 

I have done things like set a timer for 5 minutes and ignore her until it goes off, and then give her the opportunity to apologize or sit longer. 

Clara is 2 years and 9 months now. She doesn’t usually need a full 5 minutes to change her behavior. Sometimes she chooses to take that long, but not often anymore. 

I learned a long time ago with toddlers–give them a choice, and make sure YOU are fine with either option. Example–Get yourself dressed in the next 5 minutes…or wear your pajamas to the store. It won’t embarrass me. 

Apologize…or sit there. Either way, I’m fine. 

Part five–Forgiveness I have a long list of personal habits that I hope my daughters don’t remember or learn. If they only remember one thing about growing up with me, I hope they remember my capacity to forgive. 

For practice with my toddlers and children, this is an unskippable step. And under my rule, unforgiveness will often get a punishment. 

Definitely at least a lecture–unforgiveness is your biggest character flaw, _______ (insert name). You need to learn not to do that, especially to your sisters. 

Part five–Makeup Remember it enough to learn from it, forget it enough to move on.  Making up usually looks like a hug at my house.

Forgiveness can be that quick with adults, too, but usually isn’t. 

As adults, we often get hurt by grudges, judgment, moral superiority, scoffs, repeated mistakes, jabs, criticism, gossip. But to be hurt, we have to consent to allow any of those reactions to hurt us, which has been an incredibly liberating realization for me. We don’t have to be hurt. 

Probably why I get along better with kids, and probably always will. I prefer their simplicity. 

Church shoes 

Church shoes 

“Dad. Dad.” I bug out my eyes and lean my head to the side a few times, toward the little girl who has become my shadow at Creekmore Park. She smiles at my dad. 

“Oh did you make a new friend?” Dad doesn’t see well. Are you kidding me? 

“We go to school together.” She makes the announcement proudly. 

She has a buzz haircut. Even as a second grader, I know this means she has lice that they couldn’t get rid of. Dust defines the creases in her elbows and knees. This is not my definition of friend. 

She’s wearing an oversized Rheem tshirt. We get these free from school; Rheem, an air conditioning company in town, is our school’s partner in education. No one wears the free tshirts they give to every student. Maybe as a night shirt. 

She followed me over to my dad, and she’s just standing here, waiting for me to go back to the playground equipment. No chance, Crystalina. Yeah…that’s her name. See what I mean?

Just because we ended up in the same class in public school, you think that means we are friends if I accidentally see you in public? This is also not my definition of friend. 

She rocks back on the heels of her pale pink Easter-dress church shoes, loses her balance a little, stumbles a few steps backward; her shoes tap and scrape loudly on the sidewalk pavement. 

“Do you want to go on the swings, Emily?” She’s scratching some mosquito bites on her ankle, forcing me to examine the condition of her fingernails. 

I feel my face expressing my heart. I don’t try to stop myself. She pulls up her dingy ankle sock out of her church shoe to tuck in the bloody mosquito bites. 

“No thanks. I think we are about to go.” I’m crossing my arms and looking at my dad, still bug-eyed. I’m not being subtle, and the clues are just bouncing off his skull. 

“Nah, we don’t have to go yet. Go play with your friend, Emmy.” Dad settles onto a shaded park bench, crosses one ankle onto his opposite knee. Nicknames are for the house; we’ve been over this. I will have to get Mom to explain it again. 

Crystalina twists her long red and white gingham cotton skirt around, lining up the seams. I’m not certain, but it looks like someone made it for her from a picnic tablecloth. 

“You go ahead, Crystalina. I’ll be over there in a minute.” I know tricks. I get on the bench with my dad.

Crystalina beams. She shuffles across the pavement, slides through the dewy grass, crashes into the pebbles, slams onto a swing. 

“Dad. Let’s go. She’s not my friend. She just goes to my school, and she’s really annoying.” I have to spell it out for him. 

“What’s annoying? Is she mean?She likes you and wants to play. She seems nice to me.” Dad is thumbing through his Bible. Maybe he can’t hear well either. I get the feeling that possibly…I’m already smarter than him, at least socially, for sure. 

“Well…no, she’s not mean. But like…she’s gross. Did you see her sock with the dried blood on the inside from her mosquito bites? Her clothes are always dirty, and like…” I feel like I’m being so obvious. Why isn’t he getting this?

“None of that is her fault. You never know what someone’s home life is like. You don’t know if she has running water or electricity. You don’t know any of that. You have to look at someone’s heart.” Maybe he did see well. 

“Some people don’t have water at their house? Every house I’ve ever been to has a kitchen and a bathroom.” Yep. What house, Dad? You’re making it up. 

“Emily. You have to pay for water. It doesn’t just flow from any sink.” His voice is gentle; he briefly looks up from his Bible at me. 

“Oh.” I remember lots of moments when I learned something that I never knew before. 

Dad never makes me feel stupid  when he teaches me things. I don’t like when someone acts like I should already know something. 

I sat for a while, swinging my feet slowly, letting love melt ice. 

“People are attracted to the Christ in you. You have to look past a lot of worldly values, and always try to see people how God sees them. The world might tell you who is annoying or gross or unworthy, but don’t listen. Get really quiet and listen to what God tells you about them.” Maybe Dad could hear. 

I felt ashamed. I played with the strings of my braided friendship bracelets; I must have had about 40 of them on one wrist. I felt tears well up in my eyes. I wasn’t trying to be mean. I mean…I don’t want to be mean. 

An idea. 

I wiped away my tears very quickly. I picked my favorite green and yellow friendship bracelet, and freed it from the others, wriggled it off my wrist. 

I hopped up and ran to the swings. As she swung, Crystalina had been holding the chain of an empty swing next to her, saving it for me.  She dragged her feet through the pebbles to stop herself quickly. 

“Thanks for saving me a swing. Here.” I handed her the friendship bracelet. It was a wide one, the kind I didn’t know how to make. 

“Thank you!!! This is my first one.” Crystalina eagerly put it on her wrist. 

Listen to your dad. Just…listen. 

Hoard

Hoard

My garage. It was the grossest space in this old house, and that was a hard trophy to win. 

All cabinets were seafoam green, with work surfaces of grimy retro linoleum peeling up in every countertop corner. 

There was dust crusted onto everything, not dry and loose–crusted, 40 years thick. Not “flutter the feather duster over it  in my maid costume” dust, but “powerwash it, scrub with bristley brushes, ruin your jeans, ruin your hair; find out what you’re made of” dust. That kind. 

My dryer vented into the garage, regularly keeping the air steamy, and I imagine…remoistening new dust layers day after day after month after year after decade. Dust, moistened dust, dried dust, new layer dust, moisten, crust over…

I don’t know the exact nuances of making a 40-year thick crusting of dust. I only know the state of my garage when  I moved in. I only know how much scrubbing and scraping it took. 

The rickety garage door, also seafoam green, was not well insulated, was not properly sealed at the bottom. It was freezing in there unless the dryer was steaming it up, or the tiny hazardous gas heater was on. Flames shot out of it several inches high, more than once I saw dry leaves meet their demise to that fiery little beast. 

This is probably dangerous, I would think as I rubbed my cold, bony fingers together in front of flames. When did my knuckles get so wrinkly? I can pinch the skin of a cold knuckle and it will stay pinched…then slooowly, lazily melt back into place. 

The weather-stripping on the bottom of the garage door was flapping off and severely gapping in many spots. They say to build your house on a hill, to sit there majestic and wise. People can lean back and look up to admire it. A shining example on display, make it glass even. What’s there to hide?

My house was built at the bottom of a hill. My driveway serves as a slide for rainwater, nothing to slow its flow toward the busted weather-stripping. 

Muddy rainwater never flooded the garage the 4 years I’ve owned the house, but it would seep in and settle…dry slowly, leaving behind only the dirt residue. Charm…adds a bit of charm, an optimist might say. Dirt is character? Yes. Sometimes. 

I walk into the garage. I feel the weight of this project grip me, pull me under water. 

I need this crusty garage to be usable space. Dear God…where do I start…I look around for a welcoming place. I don’t find one. 

November is too cold. I was born in Wisconsin, lived there til I was 4. No, Arkansas November isn’t as bad as Wisconsin. Think positive, brain, and stop singing “November Rain” by Guns N Roses. 

So I pull everything out of it and onto the driveway. Every cabinet, every rusty paint can, every gritty ziploc bag filled with every jingle of unorganized nail and bolt and crazy unknown bits of metal. Keep these? I should keep all these, right…? I will need these old nails one day…

I try not to think of the old man who lived here before me. He and his wife were the only owners, from 1972 when the house was built until 2012 when I bought it. 

I know he was 86 when he passed. I found his obituary. His daughter gave me the keys to the house at the closing; the keychain has some small, clear plastic prism hanging from a short, beaded metal chain with a cylinder clasp. I don’t know what you call it. You place the last bead of the chain into the opening on the cylinder and press. I should keep this keychain in his honor. 

I shiver. November chill? Or thoughts of which room did he die in? Was it in here? A hospital? What’s with all the plant hooks on the ceilings? Why did one have a thin leather dog collar hanging on it? What is this blackish-brown smear on the textured paint of the wall right next to the basement toilet…? 

I enlist help to clean the garage–to power wash, to scrub, to paint. My nephew and my three oldest daughters spend hours on it with me. I buy wafer board and have it cut to size for new countertops. My dad screws them onto the old wobbly cabinets for me. 

And I don’t care how the paint job looks, anything will be an improvement. I do not care, just get it covered. We use the leftover paint that I already have.  

I have my girls slop espresso-bean colored paint on every cabinet and countertop. The cabinets are sitting on visqueen in my driveway. The paint glues the plastic to the bottom of the cabinets. I have to hold the visqueen down with my old cheerleading Asics and lift to peel the cabinets free. Obviously, I never got rid of these Asics from twenty years ago because obviously I am going to be working on my toe-touches and herkies some day soon. Any day now. 

My nephew and I paint all walls gray–two dark gray and one light gray. Maybe it looks artistically chosen. Ah, my accent wall…yes. And here we have one set of 2×4 shelves nailed together shoddily, we chose to paint these a bright Caribbean blue. It’s beautiful…it was meticulously planned and designed. It was…what we had. 

Nick (nephew) brought his music, and I bumped that shit. I made up my own lyrics and would not be dissuaded. I forget the band name; it was a bunch of letters, like SKBRTKB…you should get their album. I especially enjoyed their song that goes–“My girl’s gonna sit in the mud! My girl’s gonna sit in the mud!” 

Now, Nick who could barely breathe during his explanation, he wanted me to believe they said–“My girl’s got a city to run!” But shhh, shh…shush, Nick. Don’t ruin my moment. I dropped it low and sang along. Me in my old Asics, dropping my ass into piles of dust around the garage–“My girl’s gonna sit in the mud!”

I still got it. Maybe I can do a toe-touch in these jeggings? Hang on. Kick this leg up, then kick that leg up. Okay, they wouldn’t bust. Hop a little…eh…it’s too slanted out here. Otherwise, I’d kill it. 

I leave all the cabinets and crap on my driveway overnight. You don’t really have to be in a hurry to move stuff until you get a notice from the city. Shockingly, no one stole any of it over the two nights it sat out there. 

It was November 2014, and I didn’t sleep a lot most nights since the end of September, when Demetrius left. Might as well get up super early and buy garage floor paint. I got a midnight blue, and some paint flecks to sprinkle on top like Christmas cookies–a variety of grays. 

Nothing like good honest work to occupy a mind in the middle of a divorce, to tire an already tired body and soul. The high-gloss topcoat is moodier than I am. It only wants certain temperatures. But…I don’t have time to wait til Spring. And I suppose this is why it dried cloudy. Good enough. Better than it was. The clouds add some depth, an unexplored galaxy of paint specks. What new adventures are in store for the garage’s next 40 years…

I order a $2700 new garage door. It is so ridiculously out of place on this house. I don’t give a crap. To my credit, I have great credit. If I say I will pay you, you will be paid. I don’t care if my choices make no sense to someone.

A jewel in a pig’s snout: my lovely new well-insulated garage door, I will pay it off before the accrued interest ever hits. There are worse choices to be made in life. I’ve made plenty of them before, and now I’ll leave those worse ones for someone else. 

I put everything back into the garage very neatly. I had a lot of extra furniture, a big tv, all our bikes, bookshelves and books and books and books, sports equipment, lawn mower and crap, paint and hardware. 

Demetrius messages me some days later that he’s going to bring over the last of my boxes. What’s even left of mine there? A truckload. What’s in the boxes, I can’t even imagine or care. He piles them into my newly cleaned, freshly painted, just organized garage. 

Holiday decorations, photo albums, candles, picture frames, the weird platters and dishes, electrical chargers and cords that go to…who knows what… 

Piles and piles of crap. And my irrational attachment to them. NO! I’m going to use that one day! Won’t I? Does this have a good sentimental value to me? 

I can’t do this yet. I can’t look through it.  I just leave it all in there. I know I will hang on to things I need to get rid of. Unopened boxes of memory in my garage, in my heart. I thought I cleaned this place…

______________________

“Emily?? What’s wrong? What is it?” Keith approaches me in my garage. It is March 2015. We just met February 16. 

“This shit is breaking me. I don’t know what to keep, what to burn, what to sell, what to do with any of it.” It is too early in our relationship for a breakdown, but I am who I am, and I feel what I feel. 

He wraps his arms around me, pinning my arms to my sides with an upward, lifting force. I sink onto him. 

“I had to do this, too. It’s hard to go through everything, but you will be glad when it’s all done.” He rubs my back. We don’t hide from each other. 

“I don’t want you to see me like this, but I can’t go through all this stuff and not cry. I know I won’t be able to.” Phony is not my forte, maybe at times in my past, it was. But not now. 

“Well…do you want to be alone while you go through it all? I can go somewhere.” He releases his hold and backs away some to see my face. 

“No. I don’t want do this alone. I need help deciding what I should keep. But I will need you to be understanding, too. I will explain exactly what’s going on in my head or heart, and I will need you to understand and not be upset.” I look at him. My eyes say–I don’t want to go through it alone. And also…I don’t want to go through it alone. 

“Okay. I can do that.” Keith takes me back into his hug. 

He is going to keep me off the show Hoarders when my kids move out. He is better at explaining what needs to go. I trust him. I don’t always listen, but he is right. 

I watch episodes of that show Hoarders, and yeah, these people are extreme cases, but their words don’t always sound crazy to me. Most people who watch are probably like–whoa, they’re insane!

But I have to admit that…their logic often makes sense to me. And when people go through so much emotional trauma in their lives, I can understand that they might revolt in these sad, severe ways. 

We watched an episode recently of this old guy living in his yard instead of his house. He had piles of clothes; he slept on a pile of blankets with a tarp covering him. He was a tough veteran, and I could see myself getting along fine with him over a cup of coffee…in some place other than his home. 

Prideful, stubborn, unconventional, thrifty, resourceful, unconcerned with pleasing society, lovers of personal freedom. I do relate to some personality traits of some of these people on SOME levels. I’m not saying these feelings are all GOOD; I’m just saying I can empathize. 

Bugs, rodents, unworking plumbing, no livable spaces, room upon room of no walking room …now I can’t get on board with any of THAT

My dad always said to us–the order of your bedroom is a reflection of the order of your mind. I think about that a lot, especially when I am holding something, looking at it, deciding if I should get rid of it. 

Keith rallies for me to let go of things. He’s right. Will I ever watch these VHS movies? I mean seriously. 

Keith arrived in my life during a transition period. I guess I could’ve pretended that I had been healed for months, but that’s not how I am. 

A wound doesn’t heal completely when you keep ripping it open together. And that’s exactly what Demetrius and I did September through January, kept it all ripped open. 

Ripped open through his cheating, through my obsessing, through the separation, through the sleepless nights, through the move, through him pushing me away, through me pushing him away, through him clinging o me…trying to keep hold of some part of me, through me clinging to him…trying to keep hold of some part of him. 

Hard to heal with that much overlap of big life events; it takes a lot of honesty. 

February wasn’t long after all of this. I had been slowly facing the truth, but that doesn’t mean Keith entered my life when I was healed. 

I wasn’t entirely healed, but I wasn’t a broken half-person, desperately looking for someone to fill a void either. I was a complete person in my relationship with God, but still a very hurt person. 

I needed a strong man, who has a kind and understanding heart. Someone I could be completely honest with. 

Someone who could help me understand what to hold onto in my life, and what to let go. 

Balance

Balance

So I saw a friend’s Facebook status yesterday about how she had a seat on an airplane next to a baby and a toddler. And she referred to this as her personal hell.

We talked a little, and she mentioned that she feels anxious around kids. And she also mentioned that she has been told by parents that she “doesn’t understand” things because she doesn’t have kids. 

So I took all that in, and I truly feel that I understand every feeling she said she has regarding kids. That is, I understand as best as I can…as a stay-at-home mom who rarely flies anywhere, who only leaves the house weekly to teach six 45-min fitness classes, who mostly only has to interact with her own kids. 

But I think I “get” both sides. I do. 

As a parent of 5 daughters, I cannot tell you how much anxiety I have felt and do feel when I know I am going to have to be in an unavoidable situation when my babies and/or toddlers might do and say…only God knows what.

GOOD MOODS

Clara is 2yrs and 8months. I don’t accept that “terrible twos” is some unavoidable certain misery.  Kids understand way more than we give them credit for. And Clara and I figure it out together. 

At her young age, she understands the difference in using rude words and polite words. She knows how I expect her to talk to me AND TO ANYONE. She understands this 100%…I promise you.

Not every child grasps that, and I understand not every kid will understand that at the same time. But I hold her to a high standard of obedience and polite behavior because she DOES KNOW. At my house, she will behave, or she will not get what she wants from me.

We talk a lot about expectations when she is in a good mood. Not when she’s hungry, not when she’s tired…those aren’t the role-playing moments, those are the “let’s use what we learned moments.”

Sometimes the lesson works in the naughty moment…not always. 

PRIVATE BATTLES

Does she ever throw a toy at my head and scream, “I hate my nice words!!!!!”

Yes. 

And I scoop her up, put her butt in bed, and we can talk after your nap, Clara. Thank you. 

Do I ever give in? Do we ever negotiate? Does she ever flat out “win” our battles of will? Yes. And yes. And yes. 

But I am pretty firm and pretty stubborn, in a calm and quiet way. 

Sometimes, Clara and I make deals. She wants a red Popsicle; I ask her to eat a banana (or some turkey) first and then she can have one. 

She likes to watch the same shows over and over and over…and over. Sometimes I just let her. And sometimes I make her try something new. Negotiate.

Theory and practice…and utter exhaustion–hers and/or mine.

There are times I let go of my rules completely. I have let her climb into my bed in the middle of the night, and I just hold her. Even though I’ve asked her to please stay in her own bed and to go back to sleep on her own. It’s just…

I don’t pressure her to potty-train. I don’t and I won’t. She will let me know. I don’t believe she will be in diapers in kindergarten. 

I let her have a pacifier, and I don’t care…like even a little bit. I don’t care. If a stranger asks her/me–“Uh! When is she going to stop using that pacifier?!”

I just say–“Maybe never? Is that hard on you? Does it affect your life?” And eye contact is my favorite. People usually forget what else they want to say.

MORE PRIVATE BATTLES

It is a battle of wills, and I’ve found that the best approach is very calm, but very firm and very persistent. 

Watch any episode of Super Nanny to see it in action. I don’t think the parent should yell or spank hard. The key is control. Showing self control by example. 

You can’t do this every time, but I have had to do it at least once with every daughter–stay at it until you break them. Like a wild horse. 

“Your behavior is unacceptable; sit in that chair until I tell you that you can get up.”

And then–ignore. Go about your day happily. Talk to her siblings, talk aloud about everything you are doing, calmly and happily. 


If the child gets up, you say–sit down. If she doesn’t or if she screams no…you go get her and put her back down. That’s yes.

Repeat 1000 times. 

That’s it. Until the child apologizes or changes her attitude. That’s it. We can do this all day. You will not break Anne Sullivan, Helen Keller. 

It’s amazing what level of shrill scream and kicking that I have and can ignore. The rest of us can all play cards or watch a movie…and the “chair kid” is welcome to join us as soon as her attitude changes…or not. Her choice.

PUBLIC BATTLES

So when a child or baby is throwing a fit in public, it’s the parents’ fault 97% of the time. Usually some basic need (nap, meal, etc) has been ignored…sometimes it’s beyond the parent’s control. And sometimes the parent is shopping and ignoring.

But if every need is met, and the kid is just testing his limits. Let him know the limits, especially in public. People say–pick your battles. A public battle is a yes, every time. 

How the fit is handled is 100% within the parent’s control. I can understand a warning, maybe even a few…but after that, it’s “remove the child from public” time. 

I remember clearly a day in the store when Audrey was about 3 years old. She taught me a very important lesson, and I’ve used it since that day. 

I was in a hurry, grabbing this, grabbing that, and Audrey was sitting in the big part of the cart. Every time I stopped the cart to look for or grab something, she would stand up and act goofy. I don’t remember exactly what she was doing or saying, but it was funny and entertaining to everyone else in the store…except me, her mom in a hurry. 

I chuckled it off the first few times, and then I said–“Audrey, I want you to stay seated.” And I held the “I’m serious” eye contact for a few seconds. Audrey is hilarious, and sometimes she’s so funny that nothing penetrates her thick layer of natural comedy, nothing can extinguish her mischievous eye twinkle, and you have no idea what she will say or do next. 

So I stop the cart again, and sure enough…Audrey stands up and does a goofy dance or whatever she had been doing. I get her attention with a swat on the rear, “Audrey. Sit. Down.” Not a hard swat, I barely make pat-contact. It’s the act, not the force. An attention-getter. 

Audrey was mortified. When the other person on the aisle left, she asked me incredulously, “Why did you spank me?”

“Audrey…because you didn’t obey me.” Disobedience isn’t cute. 

“Well, that embarrassed me. And it hurt my feelings.” I can’t remember my oldest two daughters ever telling me they were embarrassed.

“Well…it embarrassed me that my daughter didn’t obey. Then people will think–oh she lets her kids do whatever they want.”

“You don’t have to spank me. Then everyone knows I’m in trouble.” She was truly hurt, sulking in the cart with her little arms folded. 

“What do you think I should do?” Kids have really, really good ideas. Ask them sometimes. 

“Just whisper to me and say I am embarrassing you.” Brilliant. 

And to this day, her brilliant 3-year-old brain idea has worked with 100% success (with my daughters 2.5 years and older). All I have ever had to do in public, is motion for them to come over to me, and lean in–

“I want you to stop behaving this way. You are embarrassing me. This is your private warning. Do you want me to embarrass you?” And they know they have a choice. You can see wheels turn, smell smoke. 

Kids have pride too. And they are brilliant. I have found that their punishment ideas are especially appropriate.

MORE PUBLIC BATTLES

I remember one time Margaret was maybe 18-20 months old. I was pregnant with Hazel. And who knows what went wrong but she started throwing a fit in public. 

Threw herself of the filthy mall floor, kicking and screaming. What to do?? I didn’t have our “timeout chair” with me! Plus…all these people were around to watch all this. 

A bribe?? Promise her chocolate? Um…heck no. A reward for this insane behavior? NO. But it crossed my mind, sure. 

I picked her up and put her on the mall bench, and I sat on the other end of the bench. Here? Now? This battle? Yes. 

It was an eternity before she stopped. Probably 5-7 minutes. She flipped herself over to her belly and attempted to flee at least  7 times. Nope. Even pregnant I could catch her, snag her back up, sit her back down. And wait. 

It’s tiring. But it’s worth it. 

CURIOUS BREED 

Kids are a curious breed…
Not exactly like a pet (well trained or poorly trained). But a lot like a pet.

Not exactly like an adult–they have no filter or need for social pleasantries. But in many ways, they are like adults.

For good or bad, I’ve always kept a good portion of my dialogue to kids as “adult words” (not cuss words, I mean not baby talk). A respectful conversation between equals.

…and a good portion of my interaction with kids involve “adult expectations.” Kids usually  understand way more than adults give them credit for, more than adults give them access to.

And within reason regarding their ages, they will behave and perform to whatever standard you hold them to. That’s the damn truth.

They have basic needs that require regular attendance… that’s the big one that parents try to stretch to limits. A toddler should not be expected to shop for 3-4 hours during his lunch and nap time; it’s going to be bad for all involved. 

That sounds a lot like humans of all ages. It is. 

Tiny Dancer

Tiny Dancer

UPDATE

Rebekah had her thyroid levels checked on Monday, June 6; she was 16 weeks exactly. She currently weighs 10lbs 13oz. (She weighed 8lbs 10oz at her 13 week appt). So her little body has really been doing good catching up on weight gain this past 3 weeks!

Her thyroid levels were pretty much the same as they were 3 weeks ago at 13 weeks. Her 16 week levels–

TSH 8.28 (it was 8.18 at 13wks, and 38.56 at 4wks old) (high is bad)

fT4 0.89 (it was 1.13 at 13 wks, and 1.21 at 4 weeks) (low is bad)

Her T3 level was never checked at any of these times. T4 converts to T3, so we will be asking the endo if all her levels can be checked. 

At 4 weeks, they wanted her to start synthroid and to get a radioactive thyroid scan. We chose not to at that time. After a series of very aggressive and threatening  phone calls from the nurse, we opted to move to a new pediatrician. And we were subsequently reported to DHS for child neglect. (Read more on that here and here).

Then after the results at 13 weeks, the new pediatrician (after consulting the endocrinologist) just wanted her levels checked again at 16 weeks (which we did Monday), and he set up a consultation with a pediatric endocrinologist in LR. No medication was prescribed at that time. 

Since Rebekah’s numbers at 16 weeks were pretty much the same as they were at 13 weeks, I kind of thought/hoped they would just want us to wait it out til June 30 (the endo appt).

However, the new pediatrician recommended she take synthroid until the endo appt, and then they will recheck levels again (she will be 19 weeks at that appt).

Keith and I talked it over, and we decided to start it. Not that we don’t have reservations, not that we won’t contact the doctor if she has bad side effects (loses weight, stops eating well, won’t sleep etc). I made a chart, and for the next 3 weeks, we are going to continue to track her progress in several areas (ounces consumed, pees, poops, sleep schedule, temperature, weight, and any other changes), and we will note the changes–good or bad. 

We are a team, Keith and I and our children. We disagree at times; we state our reasons; we talk it out; we make a united choice. A team. 

I won’t lie–it is my hope that Rebekah will be weaned off this synthetic hormone and that her natural thyroid will continue to improve on its own.

THE PROCESS

She took her first pill today, 25mcg daily. She weighs only 10lbs, so compared to adult dosing based on adult weights…this dosage sounded high to me for a 10lb baby. But we are going to see how it goes. 

We had to crush the tablet into a powder and mix it with water and use a syringe. It is supposed to be given on an empty stomach, and no foods with calcium or iron for 4 hours after.

So that was certainly hard to work out with a baby who eats only milk which is full of calcium.

She went to bed at 9pm last night; we went to bed around 10:30pm. She woke at 1:20am for a feeding. Then we woke her at 3am to feed her as much milk as possible, then we woke her again at 5am to give medicine only, then she woke at 7am hungry. Who needs sleep?

The pharmacist said to just try to do that…space it in between feedings…where her stomach will be empty from the previous feeding, and can stay empty as long as possible (even if she can’t make it 4 hours).

She eats every 2-3hrs during the day, so I do think this schedule will be the best–taking the med super early in the morning. A midpoint time between big feedings. Not easy though. 

HARD SCIENCE

We still have reservations about this entire diagnosis, treatment recommendations…all of it. 

Most health issues have standardized levels for things–what’s considered high blood pressure, what’s considered high cholesterol, etc. 

For congenital hypothyroidism, there is a different “normal range” for infants at every different lab, every different hospital, every different state. It’s insane. 

Most charts consider age to be a factor, but barely any charts consider weight as a factor. This is “hard science,” how? 

Why so many charts and ranges at all these different hospitals? Is there no consensus?

Also, Rebekah’s low birth weight, the fact that her cord attachment was velamentous (so she was likely IUGR)…none of these factors were taken into consideration when comparing her blood concentration and/or thyroid levels to “normal ranges” of average weight babies. 

Should IUGR, SGA, premature, and/or low birthweight babies be compared to the ranges of average sized newborns? Their blood concentrations are different. As I found in my reading, these exact questions divide the experts’ opinions on treating mild congenital hypothyroidism. (See my other blogs about Rebekah for links to these articles).

MENTAL RETARDATION

From my reading, the babies born with severe congenital hypothyroidism have TSH around 750-1000, and yes, those cases can lead to mental retardation if left untreated. And I read those cases usually lead to mental retardation even when they ARE treated, and even when they are treated early

But I never saw ANYthing suggesting a case of TSH of 8 ever leading to brain issues (or even untreated TSH of 38). Not whatsoever, and I’ve been reading like an obsessive nut. Did anyone find information on mild, untreated CH cases leading to brain damage?

So I reeeeally take issue with the nurse at the first pediatrician basically screaming BRAIN DAMAGE at us on the phone 3 different times, over and over. I really take issue with her/them reporting us to DHS as neglectful parents. 

Maybe this is protocol behavior? Is it? If so, then I take issue with this fear-mongering, bullying protocol. Where do I campaign for it to be changed? 

The doctors use a vague statement “congenital hypothyroidism has been linked to mental retardation.” And that’s true…the severe cases (treated or not). What about the mild cases? 

People can be motivated with fear, or with facts and information, or with concern and compassion. And not all methods are equally effective on all people. 

We don’t respond well to bullying, never have…never will. We were never given specific facts, only vague, unsubstantiated claims/threats of brain damage. We aren’t motivated by bullying, even when bolstered by ignorance. We received no kind guidance, concern, compassion, patience. 

I feel that too many factors are ignored, and that a blanket treatment approach is preferred (forced if possible) instead of monitoring levels a few times. 

REACHING OUR DECISION

I do know so many adult friends who have told me they take synthroid, and have no side effects or issues. Adults who have finished their brain development, don’t weigh 10-11lbs, aren’t 4 months old. Their skeletons are finished growing, they stay pretty much the same weight, they have gone through life’s major hormonal changes, such as puberty (and some even menopause).

It’s just…I know a body can become dependent on a synthetic hormone and then stop making its own natural hormone. 

We felt that her body needed to be given the chance to normalize on its own…and we did give her time, and her TSH did lower  considerably, and is in normal range on many charts. And her fT4 was never out of normal range, and still isn’t on many charts.

But then on the flip side of that, we decided that “abnormal” results on 4 tests in 16 weeks was enough to start the medication and then retest at 19 weeks. 

We observe her daily in “life’s laboratory” at our home. No we don’t chart and record every change, but we notice changes  (and we record many of them).

She isn’t a ball of numbers; she isn’t a stack of lab papers; she isn’t a diagnosis; she isn’t a statistic; she isn’t a blob of data. 

She’s a baby. Our baby. A precious life we value more than our own. 

She’s been gaining so well (finally in the 8th percentile); she’s so happy; she’s hitting milestones. She does have days when her eyes look tired, but less and less lately. 

Is there enough going “wrong” that she needs a daily medication (possibly for 3 years, possibly for life)? We didn’t really think so, but we will try it, record changes, and will not ignore anything. 

Siiiigh, one day at a time. 🙂

I’ll update after the endocrinologist appointment. 

Our little beauty, little miss tiny dancer

Congenital Hypothyroidism: Burn down the disco

Congenital Hypothyroidism: Burn down the disco

For the quick version for those who have kept up with the other blogs about Rebekah–she is getting her thyroid levels rechecked again on Monday, June 6; she will be 16 weeks. She has an appointment to see a pediatric endocrinologist on Thursday, June 30 in Little Rock.  She currently weighs 10lbs 10oz, catching up.

I finally felt like fleshing out more details regarding our experience with the pediatrician and his nurse  (who turned us in to DHS for neglect). So here goes…

My personality pisses off the most annoying people. And that is okay. I’m getting used to it. I can be super laidback, warm, compassionate, flexible…so easy to get along with.  Or…based on how you approach me, I can be all facts and a stone cold statue.

I give people lots of chances, and I’m incredibly forgiving, not forgetful…but forgiving. I will remember what happened, and I might keep you at arm’s length, but if you want to be back on good terms with me–okay, that can definitely happen. And if you want to battle…okay. I’m probably already dressed in my suit of armor with you.

I have an incredibly good memory–my blessing, my curse. And I keep damn good records of anything controversial that goes down. If you are in a position of potentially having a dramatic effect on my life or my family’s lives, and you choose to threaten me, promise me something, lie to me, change your facts…it’s documented. I promise you. 

As Rebekah’s parents, we disagreed with and hesitated with our first pediatrician and his nurse. I found them to be decent people at first…and still think they are, but the nurse became aggressive and condescending and even angry…with no REAL facts to bolster her aggression. She reported us to DHS for neglect because we went against their medical advice. 

The DHS ladies who came to my house were kind, diplomatic, and listened to me

My letter to the DHS investigator…

 

M—-, (DHS investigator)

I looked through my calls and voicemails, and updated the info I had emailed you with more accurate details. Please call or email me if anything is unclear.

When we go see Dr. Fife on Monday, May 16, I will put you on his list of people who are allowed to access her medical records and tests. Is that all you need me to do?

I’d prefer not to go by Dr. Dilk’s office to do this, unless absolutely necessary. Fife’s office told me that Dilk would transfer all her records to them.

Let me know.

Emily

And I included all of my notes about Rebekah in the email…

Rebekah was born on February 15, 2016. My 5th daughter with a midwife, my 4th water birth. At 5lbs 10oz, she was my easiest delivery by far. Her cord was attached abnormally, so she had IUGR (Intrauterine Growth Restriction…this is why she was small). We didn’t know this until she was born, and she was born at 39wks and 6days, only one day early. No delivery complications, in fact, I delivered her quickly once I got in the water, and I bled very little. 

In any following bold notes, MW is midwife appointment; Pedi is pediatrician appointment; BM means breastmilk; GM is Meyenberg powdered goat milk (recommended by Dr. Sears as a supplement).

Birth      5am  2-15-16    5lbs 10oz MW  BM only

1 week  12pm 2-22-16   5lbs 11oz Pedi  BM only

On February 22, Dr. Dilk was not in the office and available for our 10:30am appt because he had to go to Mercy. However, we weren’t told this until around 11:30am after waiting an hour already.

We were told we could continue to wait or reschedule. We chose to wait…because they had been adamant that they would like to see Rebekah within one week, and this was a Monday and she was one week exactly. 

Plus, we were already there, and my husband was off work and helping with my toddler and newborn. So we waited and I nursed Rebekah a lot extra while waiting. Consequently, she weighed one ounce over birthweight at this first appt after 2 hours of nursing.

Rebekah did the PKU and bilirubin tests on 2-22.

We consented to both tests. We were told it would be a heel stick only. Nurse Benedict attempted and failed to find a vein in Rebekah’s hand after bending Rebekah’s wrist in half and stabbing 4-5 times unsuccessfully. Then they finally did the heel stick they had said they were only going to do.

Bilirubin was borderline; it was 20.9 which is just below the level when they recommend light therapy. 

Nurse Benedict wanted to schedule an appt to have her level checked again the next day to see if it was going up or down. They had told me, and I had read, that bilirubin usually peaks at 5-7 days. This was day 7. 

All of my other 4 daughters had had some jaundice , and I didn’t feel that another check was warranted. Rebekah is also seen and checked by my midwife regularly. She had a few factors that possibly made her more jaundiced as well–lower birthweight, breastfed, and I have my midwife wait until the umbilical cord finishes pulsing before cutting (more blood means more dead RBC). 

“There is growing evidence from a number of studies that all infants, those born at term and those born early, benefit from receiving extra blood from the placenta at birth,” said Dr. Heike Rabe, a neonatologist at Brighton & Sussex Medical School in the United Kingdom.

And another quote from that same NPR article about delayed cord clamping“Some studies have found a higher risk of jaundice, a buildup of bilirubin in the blood from the breakdown of red blood cells. Jaundice is treated with blue light therapy and rarely has serious complications.”

There are jaundice cases that are abnormal and are a cause for alarm, and there are expected and normal cases…such as Rebekah’s. 

I told the nurse that Rebekah could be checked again at her 2-week appt if she still looked jaundiced to the doctor.

Nurse Benedict pretty much insisted that she make us an appt for 8:30am the next day. I told her AS she made it–there’s no way I’m coming at that time. I take my older 3 daughters to school, and then in addition, I would have to bend over backwards to get my 2 year old and newborn bathed and ready to be seen that early.

Nurse Benedict told me that I could cancel the appt if I realized I couldn’t make it. So…the next morning I called and cancelled it. And then made her 2 week appt. I’m not sure if Benedict was willfully setting me up to look as though I missed appointments left and right…or what here. 

Side notes–(In the DHS report, they alleged that I was a “no show” at two appts that I rescheduled, one appt that I cancelled, another appt that I never made–nor was I consulted that it was made for me, and a final appt that my husband cancelled when we finally chose to switch doctors).

I received a call on Feb 25 and 26. I returned the call on the 26th but no one answered. So I just planned to see them on March 1 at my appt. 

Screenshots of calls are at the bottom, in reverse date order. If the call is 479-314-4940, then it was an outgoing call from me. It the call is 479-259-9400, then it is incoming. 

There are also a few Little Rock calls on the list–to and from the newborn screening nurse, and to and from AR Children’s Hospital. I erased all other calls that were between my pediatrician calls, but as you can imagine with 5 busy daughters (14, 12, 11, 2, and newborn)…my calls with the pediatrician are not my only calls, nor my only daily time commitment.

Her two week appt…

2wk 1d   8am   3-1-16      5lbs 10oz Pedi BM only

Rebekah had had a runny nose and had slept a lot extra and not nursed as much this week. Plus, this appt was 8:30am, and she hadn’t nursed much before she was weighed (unlike the 12:30pm appt where she nursed 2 hours). 

The doctor was concerned about her “weight loss” of one ounce. I believed she had a fully belly at 12:30pm when weighed the week before, and an empty one at 8:30am on this day. Plus she was back to birthweight exactly…even with this slight fluctuation and 1oz weight loss. Baby should regain birth weight by 10 days to 2 weeks.

(I made a mental note to be sure she nursed very regularly between this day and her next appt. And 15 days later, she had gained 15oz.)

Side note–DHS report says they were concerned about Rebekah’s weight loss.  She lost one ounce, and was at birthweight. By the next appt, 15 days later…she had gained 15 ounces.  

She has never weighed below birthweight–not at the doctor’s office, with my midwife, or at home on the borrowed scale. 

This is neglect? I have heard of so many newborn babies being so much smaller than she was and/or losing so much more weight. 

Dr. Dilk acted irritated that there was some “misunderstanding” and that I didn’t come back a second time the week before to have her bilirubin checked. I told him I didn’t believe there was a misunderstanding. I had cancelled the appt because I believed she was fine based on the test that showed…she was fine (below the level needing light therapy).

He said she still looked very jaundiced to him, and he wanted to check again. My husband consented, but requested the heel stick only…instead of the excessive unsuccessful jabbing and then the stick.  Rebekah’s bilirubin was 11.4.

Dr. Dilk didn’t make any comment to me about this level, in fact his nurse was the one who called and told me the result. At her next appt (2 weeks later), he mentioned that her color looked fine. He didn’t ask to retest bilirubin again at 4 weeks. 

Side note–The DHS report stated she had “severe jaundice” and “prolonged jaundice.” Her bilirubin never reached the level where they even recommend light therapy; her eyes were never yellow. But it was considered severe?Okay. 

She was also regularly seen by my midwife who has been a nurse, midwife, and/or EMT for decades.

I did feel that “severe” and “prolonged” were not accurate adjectives, but okay. We consented to having her blood drawn and tested twice to check bilirubin levels, and both times it was below the level requiring light therapy. This was neglect? How?

Persistent jaundice in the neonate is defined as jaundice that lasts longer than 14 to 21 days “

Breast milk jaundice is a type of neonatal jaundice associated with breastfeeding. It is characterized by indirect hyperbilirubinemia in a breastfed newborn that develops after the first 4-7 days of life, persists longer than physiologic jaundice…”

March 10–I missed a call from pedi at 10:30am. Benedict left a vague message–they “wanted to talk to me about some of Rebekah’s results, and to talk about a followup.” I still have this voice message. I planned to call back the next morning. Her message basically sounded like they were scheduling the next appt, didn’t sound urgent whatsoever. 

March 10 was my 5th grader’s birthday and also my two oldest daughters were trying out for cheerleading that day. I received and missed another call from Benedict at 2:40pm, assumed it was again about rescheduling…no voicemail, and planned to call the next day when my schedule was less hectic.

I missed several other calls that day (not just pedi calls, I deleted the other calls from my call log to take a screenshot of all our conversations and contact with their office). I missed so many calls that day as I was busy with a  birthday and cheer-tryouts (and with my toddler and newborn). One call I missed was from Nurse Brown who was with AR newborn screening. 

I didn’t recognize the phone number and didn’t answer. I thought the voicemail might be another spam call telling me I won a cruise, so I didn’t even listen to it until I wasn’t busy, which was about 10pm that night. (My older daughters had both made cheer, and we had been at a dinner and meeting until late that night.)

The message from LR newborn screening said Rebekah had an abnormal result on her PKU test, message was on 3-10-16.

I called LR first thing on 3-11-16, spoke to Nurse Brown for 20 minutes. She told me that Rebekah’s thyroid test had an abnormal result. We weren’t told the TSH or T4 levels. But I will say Nurse Brown was incredibly kind and helpful. 

She also told me that my pediatrician “turned this issue over to her” because they said they were unable to reach me, and they made it sound like I never communicated with them, which I have several incoming and outgoing calls of varying lengths to disprove this. Nurse Brown even said, “You’ve talked to them and been to appts that many times? Now I wonder why they made it seem like they never spoke to you…”

Nurse Brown said that often the PKU tests result in a false positive, and that I just needed to have her thyroid rechecked. I had an appt with my midwife on 3-14, and I rescheduled with Dr. Dilk for 3-16 to get her levels retested.

4wk      10am   3-14-16     6lbs 3oz MW   BM only
4wk 2d  11am   3-16-16   6lbs 9oz Pedi  BM/GM

Rebekah has a different thyroid test on 3-16-16. I received a phone call from Nurse Benedict on 3-18-16. I was told by the nurse (not the doctor) over the phone that Rebekah’s results were consistent with congenital hypothyroidism (which wasn’t even true. CH would be low T4 and elevated TSH. Her T4 was in normal range, but I didn’t know the “nurses’s diagnosis” wasn’t accurate until I got Rebekah’s paperwork. Why would we give her a prescription for fake T4…when her T4 was IN NORMAL RANGE? This makes sense?).

Individuals with CH are unable to make enough of a thyroid hormone, so a low level of thyroid hormone in the blood may indicate that your baby has CH…”

I wrote down some and memorized some of the information she told me. I asked to have Rebekah’s medical records and labs mailed to me. Benedict said I would have to sign a medical release. I had already signed one, but okay. The day I went to pick up her records in person, the receptionist didn’t even ask for my ID. 

Nurse Benedict stressed over and over that Rebekah would have brain damage if she didn’t start taking Synthroid immediately. No actual scientific proof or evidence of this scary threat/claim was offered WHATSOEVER. 

From my own research, I found cases of untreated SEVERE congenital hypothyroidism leading to brain damage, but never mild untreated cases. (Which…if her T4 was IN RANGE, they shouldn’t have even said her results were “consistent with congenital hypothyroidism” anyway.  A topic for another blog.)

In fact, I found instead…articles where endocrinologists DISAGREE about whether mild cases should even be treated, especially in babies who have low birthweight. 

“Further trials are needed to determine the thyroid hormone profile in both preterm and full-term SGA newborns and also to evaluate the effectiveness and safety of LT4 treatment in these infants.” (More links in other blog called Rebekah Update).

So I have a nurse tell me a wrong diagnosis over the phone, and she tells me I need to start giving my baby this fake hormone daily…or she will develop brain damage. I then find lots of scholarly articles (written by specialists) and studies that warn about the controversy in treating SGA (small for gestational age) babies with LT4 (levothyroxine/synthroid), so I am hesitant…and I want more information before starting the drug.  So is this the part of my behavior that proves I’m a neglectful parent? Because I read?

But Synthroid MIGHT bring Rebekah’s TSH into range. Is that enough of a benefit to start it? As her parents, we had to weigh out that decision. Does synthroid always bring numbers into range and keep them there? Does putting a baby on synthroid guarantee a life free of worries, as many people have suggested to me?

I also read so many parent forums where babies ON SYNTHROID continued having crazy test results–super low TSH and super high fT4…both levels insanely out of normal ranges. Such as this…

Dr. Dilk never spoke to us after these thyroid test results, not even on the phone. I do feel that all of this was VERY MISHANDLED. 

Rebekah was never examined for any symptoms of this disorder, nor were we asked if she had any of the symptoms. Almost as if Nurse Benedict were reading a script, we were told–START THAT MED, or she will develop BRAIN DAMAGE. Who wrote her this script to read?

We were told that we would be referred to a pediatric endocrinologist in LR. We were told over the phone to go pick up a prescription for Synthroid. We were not informed of any risks of their suggestion OR of any other options (Armour thyroid, foods or supplements that enhance a thyroid’s natural functioning). We were not informed of something called transient congenital hypothyroidism.

I had so many questions. So I did my own research about all of this, and we chose not to pick up the prescription or give it to her at that time. Different information or different test results could change our minds, but so far I haven’t seen it. 

We had started supplementing with goat milk on March 14, even though I wanted to breastfeed only, as I had only breastfed my other 4 girls. I didn’t want Rebekah to get frustrated at the breast or nipple confused. However we started supplementing to help her catch up on her weight quicker. Appointment with midwife on March 21.

5 wks    10am   3-21-16   6lbs 15oz MW  BM/GM

I had tried to call AR children’s myself on March 18 to schedule an appt (see call log), but I was told they had to receive the referral from my PCP first. I told the woman that we were researching Synthroid and unsure we were going to put her on that. The woman at childrens told me we would have to follow our PCP’s recommendations until we were contacted to set up an appt. 

We had to give her fake T4 when her T4 level was in normal range? Why? So I read more. 

I received a vague message from Childrens on April 13 (still have this) saying Rebekah had a 1pm appt…but the date wasn’t even stated on the message, and no one had spoken to us from my pediatrician’s office or from Childrens. I had not been contacted by anyone to schedule this appt, told it was going to be made…nothing. No further communication from our pediatrician whatsoever. 

I called AR childrens back on April 13 and found out that an appt had been set for us for the next day (??). The woman at childrens said they spoke to someone at my pediatricians office. But we weren’t called. 

We were both working on the next day, and couldn’t possibly get our shifts covered with half a day’s notice. I also had no childcare in place for my toddler so she wouldn’t have to travel 5-6hrs. 

So I cancelled it and got their contact information. I told them we will call back to reschedule if and when we decide to have her thyroid scanned.

Keith and I discussed this issue at length, and we had decided we would have her checked out at a later date or if we noticed any alarming changes in health, happiness, or behavior.

She was gaining. She was happy. She was hitting milestones. She follows objects with her eyes, smiles at us all the time, coos at us, eats and sleeps and poops and pees regularly. 

What were they wanting to change or fix or improve? Her TSH only? I had read plenty on to be convinced there was no guarantee that Synthroid would “solve” TSH levels. 

She had IUGR and was subsequently fairly small, and yes…she was still little, but gaining and happy. I will say that her “holding up her head strength” probably needed improvement. For a while, her head and belly were big compared to her little limbs (which seems consistent with other IUGR babies’ photos I had seen).



Rebekah at 14.5 weeks

We supplemented with goat milk a while; I went back to strictly breastfeeding a while. We borrowed an electronic scale from my midwife. And we weighed Rebekah at 8-9pm every night, and kept track of her progress.

So, we assumed that was that. We would have her rechecked some time later or if we noticed changes that were unusual. So a week passes. 

On April 21, I received a call from Nurse Benedict from Dilk’s office, and she is sputtering like an angry auctioneer, stating I had missed my appt with Childrens. I asked her–who made that appt? No one had spoken to me regarding availability or ANYthing, and I couldn’t make it with a half-day notice. 

She mumbled something about how she thinks she might have asked Childrens to work me in last minute. But again…no communication with me if I was free to come there the NEXT day. 

She asked me if Rebekah had been taking the Synthroid. And I said no. She flipped out and started talking over me and throwing around the words “brain damage” again. I had to cut her off to squeeze in my words–I wasn’t thrilled with the list of Synthroid side effects; I wasn’t necessarily thinking a radioactive isotope scan was necessary; I wasn’t alarmed by Rebekah’s behavior or progress hitting milestones. (And at this point I didn’t even know that I was given wrong information on the phone…her T4 was in range all along, and this nurse was prepared to shove fake T4 down Rebekah’s 2 month throat herself.)

She insisted that I come to see Dr Dilk ASAP since I hadn’t done his/their other recommendations. I wanted to schedule for a mon, tues, or wed…because that’s when Keith is off and could come too. I told her I could come Monday May 2, so we made an appt.

I switched to pumping to feed her the breast milk on Tuesday, April 26. Then the next day (Wed Apr 27), we started supplementing with goats milk again (since she was doing breast milk from the bottle anyway).

When Keith saw on the calendar that I had scheduled for May 2, he asked me why I chosen that date because he had work obligations that week. I told him there was no way I was calling to reschedule it based on how I had been treated. So he called to reschedule for the following Monday, May 9.

Nurse Benedict got irate with him (according to Keith; I didn’t actually hear the conversation), and she threatened that “something was going to have to be done” about us. He asked what that meant. And she said–well, this is all a form of neglect. She went ahead and rescheduled for May 9 (Rebekah would be 12 weeks exactly on that day).

Frankly, we didn’t appreciate or even understand the nurse’s hostility and threats toward us. Why? I still don’t understand. 

Their recommendations based on test results were not personal attacks against us or our daughter. I never took the recommendations as attacks. 

Likewise, our decisions were not personal attacks toward them. We took the information they gave us (albeit some wrong information), we did our own research, we looked for actual facts and studies and evidence, we weighed out risks and benefits. We made our choices. 

Did she take our choices personally? That is what I think. 

Keith and I discussed everything. And we decided to ask around for a recommendation for a new pediatrician. I scheduled ASAP with Dr. Fife. The earliest he had was 11am on Monday, May 16.

I told Keith that he needed to call to cancel with Dilk, and he did this on Friday May 6 (see call detail). He told the receptionist we were scheduled with Fife for a second opinion on Mon, May 16. And if Dr. Dilk himself wanted to speak to him, he could call him back.

We received no further communication from Dilk office. However, according to the DHS report, they apparently left our Monday appt in the system instead of cancelling it…to make it look like we were neglectful no-show parents…again.

DHS investigators arrived on Wed May 11 to read allegations that Rebekah was being neglected. 

Allegedly, she had weight loss that concerned them (an ounce…which brought her down to birthweight at 2 weeks old) and gaining problems (?), she had severe jaundice (which was below the level requiring light therapy…and which was significantly lower when checked a week later), she had prolonged jaundice (why did he not ask to measure bilirubin at 4 weeks then?). Also…we were allegedly “ignoring” her care and diagnosis. Um, no…we just needed some time and space and more information…ESPECIALLY factual and correct information. 

Rebekah is our concern. Rebekah. Not being bullied with incorrect diagnoses and unsubstantiated threats. Rebekah. 

Rebekah’s TSH was 8.18 (also in range now, on some charts at children’s hospitals) on May 16. We are still going to have her levels rechecked a 3rd time on June 6. Of course, we hope that both levels are still in range. Of course we hope that. 

On Monday, May 16…

Her fT4 was 1.13

Her TSH was 8.18

We have an appt with a pediatric endocrinologist for a consultation on June 30. (I have been compiling a list of questions. Pray for Rebekah. Pray for us. Pray for him.)

I’ll update soon about how the new pediatrician appt went.  Not now. This entry is long enough already. 

Just…DOCUMENT everything, especially if you are unconventional. Journal all details. Write it down. And expect to be attacked. 

People wear me out. This sequence of events is to be considered “care” and “therapeutic”?

Call logs in reverse order, starting with soonest calls…

From Keith’s phone…
Version 2

Version 2

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