Walk

Walk

It’s not the casserole. 

I am an audience member of my once-life. It’s that. Watching someone else play me. That. 

I don’t remember how to ride in the backseat. I know how to get out of a car at a stoplight. And I know how to walk. 

I know how to walk in painful shoes and not wince. I know how to step on a rock, twist my ankle, crumble to the ground in the middle of a busy road. I know how to get back up and keep walking. And keep walking. 

I know how to walk. And walk. And walk. And walk. 

Ask him. 

I don’t know how to hurt in socially acceptable ways. I don’t know how. 

Don’t expect me to ride along. I know how to walk.

I know how to drive myself. I know how to get away when I need to. I know how to walk away. That. 

I know how to feel invisible. I know how to feel invincible. That. 

Don’t look around, unless you can handle seeing that I’m here. And I’ll be here. And I’ll be there too. 

It’s not the casserole.

It’s the backseat. 

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Did you…

Did you…

Did you think you weren’t my favorite daughter? Because you were. You were, you were. 

Please don’t ever think that. 

_____________________

“I hate you!!!! I hate you, Mom!!” Her feet are close to the edge of the broken floor tile. Her face is red rage and tears. 

“You can’t act this way, and it’s my job to make sure you know that.” I pick her up and carry her to the dining room and place her firmly on a chair. She doesn’t know that I’m getting her foot away from the tile. She doesn’t know that I’m getting her 4-year-old eyes out of the kitchen. 

“Aaaaaaaaa!!!!” She swings and kicks her legs so much that the chair bounces around.

“You. Better. Quit.” I kneel down in front of her, place a hand on either side of the chair to steady it. My face is calm. My heart is racing. She looks away first. 

“I hate you!!” She screams to the back of my head as I walk into the kitchen. I put a new, clean trash bag into the trash can and bring it back to the dining room. 

“Take off your new dress and put it in here. You will not be allowed to scream at me and hit and kick me wearing this dress I just bought you.” I hold the trash can out toward her. 

“I don’t care! I don’t want it! It’s ugly!” She takes it off and throws it in the trash. The giant jewel on the top of the dress hits me in the knuckle; I clench my jaw. 

“You won’t need this baby doll with a matching dress either.” I pick up her doll off the table and drop it into the clean trash bag. 

“I don’t care.” She opens her mouth slightly again, then closes it. Crosses her arms. 

“What’s it going take? Because I can keep going.” I can’t keep going. I can’t, but I will. 

My methods are probably all wrong. I don’t know what I’m doing. We don’t usually say it, but most moms…we think it. We don’t know what we are doing, or if it’ll work. 

I pick up her new iPod touch, drop it loudly into the trash, never looking away from her eyes. She doesn’t care. I don’t know what else to throw away. I don’t know how to break her rebellious attitude. 

Freddie bounces his way into the dining room, unwittingly. Her sweet, fluffy gray kitten. He bats at a dust particles swimming around in the light from the bay window. I scoop him up. 

Her eyes look worried.

“I guess you won’t be needing your kitten either.” I place him gingerly onto her dress in the trash can. 

“NO!! Please NOT Freddie! I’m sorry.” Her sob changes, her voice softens. “I’m sorry, Mom. I’m sorry. I don’t hate you.”

She reaches for me. I can’t pick her up fast enough. I fold my arms under her baggy Dora panties. Her tiny butt rests on my forearm. 

We bend down together and pick up Freddie. He’s not worried. He wants down so he can attack the dust again. 

I collapse onto her chair and we hold on and rock each other. Paper mache streaks of snot-glazed hair.

Shh, shh…you are my baby forever. You are my favorite. 

I hold on. I rock. I think of all the things we never did do together, all the things I should’ve done better…

____________________

If you think a person can’t have five favorite daughters, then you obviously don’t have five daughters.

Two spoons: Congenital Hypothyroidism, video timeline

Two spoons: Congenital Hypothyroidism, video timeline

I keep an unorganized mental log. I have vivid memories, especially of the emotionally-charged moments.

I decided to share some more video clips and notes about my daughter, Rebekah Ruby Kate (currently 7 months old)

Born on February 15, 2016

Born at 39 weeks 6 days

Weighed 5lbs 10oz (my 5th daughter)

Rebekah had velamentous cord insertion (cord attached to amniotic sac instead of placenta). Because of her abnormal cord attachment, she had IUGR (intrauterine growth restriction), and she was also SGA (small for gestational age).

Tiny and perfect to me. She has had some health setbacks, but she faces them with the sweetest temperament. They don’t subtract one ounce from her perfection to me. 

Rebekah had abnormal thyroid levels (elevated TSH) at 1 week old, 4 weeks old, 13 weeks old, and 16 weeks old. But because her thyroxine was always in range, and because I had read extensively about the differences in the hormonal profiles of SGA babies…we waited. 

We chose not to start Levothyroxine until she was 16 weeks old. 

Before 25mcg Levothyroxine…

February 16 (one day old)…

March 19 (one month, 4 days, 6lbs 15oz)…

April 8 (almost 2 months, 6lbs, 6oz )…

Rebekah lost 9oz of weight between week 5 to week 8. My milk supply was low, and I had to fight hard to continue breastfeeding, something I never had to do with my other 4 daughters.

I tried fenugreek, pumping, coconut oil, lactation cookies with Brewer’s yeast, ground flax, tons of water, chia seeds, coconut water…you name it.

And when she was 10 weeks, and had gained her 9oz back on only breast milk, I finally started supplementing with goat milk. I would still pump daily as well. 

May 17 (3 months, 2 days, 8lbs 14.5oz )…

May 22 (3 months, 7 days, 9lbs 8oz)…


June 2 (3 months, 18 days, 10lbs)…

June 6 (3 months, 22 days, 10lbs 8oz)…


I did feel that she was doing well with all her milestones without starting Levothyroxine , but we agreed to start it when she was 16 weeks old.

I put all her thyroid level results on this paper, including the lab ranges which are different.



SHE STARTED 25mcg LEVOTHYROXINE ON JUNE 8, 2016 (16 weeks old)…

We crush her pill between two spoons, every morning. We mix it with about an ounce of apple juice or water. 

We read in the drug’s instructions to take it on an empty stomach. This is quite a feat with an infant. For the first 3 weeks, we would feed her at 9pm; she would wake herself around 12am to eat; then we were waking her at 3am to eat, then waking her again at 5am for her med, and then she would wake at 6am ready to eat again. 

Pretty much…we didn’t sleep. 

Then on June 30, when we met her endocrinologist for the first time, she told us she tells her parents they can just give it with a feeding. 

Well hallelujah. So then we would just let her wake us. 

Rebekah developed torticollis (her head leaning right) almost immediately after starting Levothyroxine. I looked up anything I could to find out if there was a connection.

I only found that muscle aches were sometimes a drug side effect. So we decided they weren’t connected.

June 11 (3 months, 27 days, 11lbs)…

On the med, she started to be incredibly lethargic, especially in the afternoons. There were several weeks that her overall health was much worse after starting Levothyroxine. (Though some things improved later.)

I kept a detailed log of several of her daily habits and figures. Just to see if anything changed…


On June 12, when Rebekah was about 16 weeks old, I started making a more complicated formula that I got from Dr. Axe’s website–goat kefir, coconut water, flax oil, nutritional yeast. 
June 15 (4 months, 11lbs 2.5oz)…


It seemed that her torticollis was worst when she was sleepy and/or had a full belly.

June 16 (4 months, 1 day, 11lbs 5oz)…

I stopped pumping breastmilk for her completely around July 1, 2016. My supply just dwindled and dwindled. It was a heartbreaking choice, and even today…2.5 months later, I hope to somehow go back to it. 😞

_____________________

Rebekah had what seemed like a panic attack on June 24. It was incredibly scary. She had a mild fever, shifty eyes, very quick breathing and a fast heart rate. I guess I deleted the videos from that night. I wish I could delete my memories of it.

She ended up falling asleep that night, but then her fever continued the next day. I called the on-call nurse at AR Children’s; they recommended I call poison control. The poison control guy recommended I not give her any more Levothyroxine until her thyroid levels were checked.

This was all on a Saturday, so that means I spent about an hour at a walkin (after calling to find out if they check thyroid levels, and verifying with AR Children’s that I could use them), only to have the walkin Dr check her vitals and  recommend that we go to the emergency room instead.

I spent about 5 hours in the ER with her–rectal temp 102.7, heart rate 185, 36 breaths a minute. This is my 5th child, so I realize these aren’t alarming vitals by themselves. But I was concerned about her behavior; the poison control guy wanted her checked out; the walkin Dr wanted her taken to ER, and her whole life has been so drastically different than my other girls.

They did a chest xray, a port in her foot (which ended up being unusable), drew blood, did a catheter, drew blood again. Everyone was incredibly kind, but the experience was sooo traumatic. But mostly…we waited and waited and waited.

Her thyroid levels came back in range. She was diagnosed with a UTI; they said her behavior was “normal” febrile seizures. She was prescribed Cephalexin…and we all went home exhausted.

________________________

Rebekah woke several times at night, and she would have a completely soaked diaper 3-4 times a night, so soaked that they would soak her outfit and sheets every time. 

If you’ve followed any of Rebekah’s story and you thought to yourself–that baby needs drugs! Well, I’m sure you were relieved when we started her on Levothyroxine, but if I’m completely honest, she has faced her biggest health challenges and scares right after she started and the entire time she was on 25mcg of Levothyroxine. 

I can’t say, and I’m not saying that the med CAUSED her torticollis, insomnia, panic attack, excessive urine, her UTI. But I am saying it’s been rough. Rough on her. Rough on us. 

July 3 (4 months, 18 days, 11lbs 12oz)…

Rebekah started seeing a chiropractor on June 22, and her torticollis was better almost immediately. 

July 10 (4 months, 25 days, 11lbs 12oz)…

Rebekah rolled over around 5 months, and in many ways she was adjusting her her dosage and doing okay. 

July 29 (5 months, 14 days, 12lbs 10oz)…


However, she still woke several times a night with soaking wet diapers, and she was not gaining much despite her large calorie intake. 


HALF DOSE 12.5mcg LEVOTHYROXINE (STARTED AUGUST 17)

On Wednesday August 17, I decided to start giving her only a half dose for a few days to see if it changed her naps and sleep quality overall, her excessive urine output…etc. 

I contacted the endocrinology nurses; they consulted her Endocrinologist, and she said we could leave it at a half tablet until September 12 when she had her levels checked again. And then we would go from there. 

.

August 17 (6 months, 2 days)…

Her sleep quality improved overnight; she only had to be changed once at night now (instead of 3-4 times); she has started keeping her weight on, and her energy levels improved as well. I hoped her levels would “agree” with her behaviors. 

Rebekah sat up on her own for the first time ever on August 19. She’s been more talkative and active, and also…more peaceful and restful at night and nap times. 

August 19 (6 months, 4 days) …

On September 12, Rebekah’s TSH was 4.32 (in range) and her fT4 was 1.28 (also in range). Her endocrinologist said she can stay at 12.5mcg until her level check on December 12. 

Depending on her levels in December, the endocrinologist said that we might talk about stopping the med entirely by Rebekah’s first birthday. 

God is good no matter what, and we are hopeful…

.

September 18 (7 months, 3 days)…

hamster wheel

hamster wheel

If you see a mom…

Early on a Sunday morning…

In an empty parking lot…

Leaning on a steering wheel…

Face down on her folded arms…

Shoulders shaking…

It’s nothing important.

Just don’t…

Honestly, you wouldn’t even…

It’s the hole the squirrels chewed into the soffit,

And this isn’t her first time,

And it’s all the condensation cup circles,

And don’t text,

And it’s the sliding minivan door that’s off-kilter,

And don’t attempt to understand,

And it’s the beeping smoke alarm,

And she doesn’t want to do this,

And it’s the pile of unread books,

And don’t make that face,

And it’s that mountain of Wal-mart donation bags full of clothes.

I know I am, but if I know it,

Then I’m not.

If this is my sanctuary, 

Then let it be that, please. 

I don’t have a walled garden of flowers. 

This is what I have, where I have. 

Don’t you think I know crazy when I feel it pulsing?

If you give a mouse a cookie…

I think I might have. 

You know how it will be. 

If you don’t get it,

Do you think I care?

If you don’t…

Look away. 

Stay away. 

Vinegar

Vinegar

I don’t make love easy. 

I don’t know, maybe my stubborn battles stem from subconscious value for self, value for ideals, desperate need to kill boredom. 

If you can’t come at me like a starving beast, then just roll over and snore. Because I want all. 

And then the revolts.

I can cross my arms. My mouth can play the devil’s advocate to my own heart. I don’t have to agree to anything. I don’t have to eat. I don’t have to get out of bed. 

I don’t need a calendar. My blood burns, feels every phase of the moon. I know when it’s full. 

And I’m not old yet.

___________

One time I tried to knock him over, who remembers why? And I’m no Yorkie, lap chick. I’m a St. Bernard lady beast. I’m a lioness. 

I slammed into him. Like he was one of those things the football players run at. Like that. 

He didn’t budge. He laughed, which infuriated me.

What do you want with me? I don’t know a damn thing about guns or cars or politics. 

Why me? I am loud music and Tetris-y games and poured out feelings. I’ve seen girls who like guns and cars and politics. Why not them?

But okay, no I get it. I know guys who are just like me, full of feels and…

You won’t ever have to babysit me at a party. But just know…if you try to make me mad or jealous, if you treat me bad in front of everyone, I can be a breeze out the window. 

__________

If life can’t be this way–lush green grass, all white walls, clean dark hardwoods, no dust anywhere, then…I’ll have none of it. 

If we can’t be on the same team, if we can’t make plans and goals, if I can’t be your cattle prod…if you can’t be mine, then what’s the point? What are we doing here?

Juice is sweet and sugary. Babies love juice. They can drink so much. But then it ferments. Wine is good. It’s fun. Good for laughs. Wine becomes vinegar. And that’s the best. Sour and powerful and useful. Potent. 

If you don’t love vinegar, go get juice then. Go have wine. 

I am vinegar. But not old. 

I will never be old. 

Ripple

Ripple

Even a pebble makes ripples, Dad says.  But I didn’t drop a pebble in the pond, did I, Dad? It wasn’t a pebble. 

It was a boulder, wasn’t it? It was two boulders, maybe. It was…a landslide. And the water may never be still again. 

Our life was a series of pedestals, and we tiptoed around on them. I guess I never did belong up there, trying hard to balance precariously alongside people who proudly live on pedestals, who look down at people below who never deserved to be up there. 

Who is a good person? Who? Who has a good heart? The heart is deceitful above all things and desperately wicked; who can know it? Only God. Not any person on any worldly pedestal. 

We were kids, 17 and 16. I remember well. Funny, smart, hardworking kids. Making bagels. Scrimping. Making plans. Listening to Radiohead. Thought we had the bull by the horns, maybe we did for a while, but no. I guess we caught the tiger by the tail instead.

People like wrapping loss up in little justification packages–

The problem is…I married an asshole. The problem is…she turned out to be crazy. We just, we didn’t know what we were getting ourselves into…

Bullshit. 

You know it is, and I know it is. 

There was love. There was more than one betrayal from both of us. There was forgiveness. There were hurts. There was a lot of interference from people who didn’t belong between us. People I let in; people you let in.  There was apathy. There was triumph. There were so many laughs. There were cries. Sure. 

Every marriage is two sinners who buckle down and refuse to give up on each other, against whatever odds they have both brought to the table. And we did that. For 15 years, we did that. 

I cannot tell you how many inaccurate, blatantly ignorant comments have been made to me over the years by so-called friends regarding my first marriage. 

“I think maybe you just never loved him.” “I didn’t know your marriage was a facade.” “Don’t say hi to me in public, Emily, because I’m not ready for that; I know what’s really going on.”

Oh do you? You all knew the intimate intricacies of my own marriage better than I did? Interesting. 

Where were you when we decorated our first apartment? Where were you when we took care of each other when we were sick? Where were you when I cried about his betrayals? Where were you when we held hands as I pushed our daughters into the world? Where were you when he forgave me for my betrayals? Because I don’t remember any of you being there for any of it. So you go ahead and believe your shallow lies. 

We became the ending only.

If every marriage is a refusal to give up, then every divorce is…giving up on each other. We did that, too. And none of you were a part of any of it. 

 “I will kill every feeling I have for you. You will mean nothing to me. Nothing.” You said it. And you meant it. And you live it. Fifteen years of mostly good memories, but none of it will matter. 

Used to was: I could do no wrong in your eyes, even at times when I knew I was so wrong.

“Emily, I’ve always been on your side. Even when no one else was. It was me. I was. You know that’s true. Even when we separated, people would tell me how it looked, what you were probably up to…and that’s never how I saw it. Not my Emily. No. ” He loosened his tie and unbuttoned his collar. Choked it back. Not one to cry.

But now. It seems I can’t do anything right. Every way that I handle things, you have a judgment, a criticism, a remark, a request. You see me through crap-tinted glasses. Everything about me is shit now. Okay.

I became the ending. The fleeting backstage deceit made the spotlight years a lie to you. My name becomes a knell that few dare to toll in your presence. Or maybe a joke…Yeah, probably a joke. 

I did do lots of wrong. And I’m sorry. Do you even know that I’m so sorry? I’ve said it, but you aren’t one to acknowledge any emotion. I remember your brother sobbing at your grandfather’s funeral. And you leaned over to him, “You don’t have to think about anything sad, and then you won’t cry.” Your solutions. 

Would it make me a better person to pretend my heart never loved you before? I don’t really trust people who do that. To turn every speck of love into loathing? Erase every photo. Block every memory. Never happened.

Should I pretend we don’t know each other? Maybe we don’t anymore. But we did. 

Tell it however you want to. No, you will choose to say nothing. You do that. I will keep the photos and memories and stories.

If I die first, don’t worry, no one expects you to cry. But when you die, I will quietly sit on a back row at your funeral. And I will cry. I’ll remember the full story. And I will cry.

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.”