Monday, October 30, 2017

T-Man Update, 2017

Seven years ago, I filled my October days by completing adoption paperwork and preparing a gender-neutral nursery for whichever baby was entrusted to us.

Six years ago, I filled my October days and nights by recovering from childbirth, muscling my way through breastfeeding, and marveling at the most extraordinary human*.

Five years ago, I filled my October by reading labels, relearning to cook in the face of multiple food allergies, laughing at my baby’s wonky crawl and adjusting to apartment living.

Four years ago, I filled my October by crying, worrying, researching and otherwise hunting for the breath that had been knocked from me when the pediatrician said, “That’s a language delay.”

Three years ago, I filled my October by watching for problems in a twice-sutured surgical site, fighting off the many shoving us toward public school special education and attending therapy no less than six times per week.  

Two years ago, I filled my October by growing to love T’s preschool teachers and taking naps as Baby N wrecked first-trimester-havoc.

One year ago, I filled my October by wondering if we were pushing T too hard, chafing at the constraints of a small house and laughing at my fabulous five.

This year, I filled my October by marveling at my extraordinary humans, laughing at my fabulous five, and packing moving boxes.

My Extraordinary Humans, At Whom I Laugh:


I thought I was a whole person until I met T. Holding him for the first time six years ago I felt more alive, more capable of love, prettier, smarter, calmer, altogether more “me” than I ever had before. It’s the same today. I am the best expression of myself when I am holding my son.

What’s really amazing, is T seems to have that effect on many people. Those who pour their hearts and knowledge and energy into him get it returned to them many times over. The place this is easiest to see is school. I cried on the last day of preschool last spring, dreading the leap to elementary school. By some mysterious mystery, some blessed blessing, T has had a flawless transition to kindergarten. Not everyone knows him yet, but those that do, love him and work hard to keep him safe and push him towards excellence. Getting to watch other people love my son is such a gift.

So, the update on T is he’s doing great. He loves school; school loves him. He isn’t always impressed with my lunch-making-skills, though. The first week of school he informed his teacher that the snap peas I sent were actually trash.

Big N

My refining fire, this boy continues to grow into the most unexpected keeper of zeal. He loves dinosaurs, his best friend, war, cooking, sharks, his stuffed bear, baseball, God, history, family, and extra sharp cheddar. He is still homeschooled, because he is flourishing. He plays rec-league soccer and baseball; this winter he’ll add on basketball. He’s as cute as can be, even while pushing every button I possess.


My girl. She loves purple, kitties and going to preschool. She regularly points out other students and says, “That’s my best friend!” Her teacher is T’s very first teacher, so I know she’s in good hands. She has discovered the thrill of headbands. AB prefers tutus and her brother’s old yellow rain boots. She is wild, compassionate, silly, smart, argumentative and tender. She knows that being strong is great and can be found flexing as often as she twirls.

Baby N

This boy has reached the age of absolute bliss. My favorite age range is 15-18 months. Baby N fills my days with laughter, hugs and raspberries as he explores his world. His run, mischievous eyes, laugh, destructive intrigue, blankie toting, words and babbles are the things that dreams are made of. Hollywood has no fairytale as magnificent as the one I’m living as I parent this stinker.

Packing Moving Boxes:
Whoop Whoop! Yes, you read that right! No more chafing at a small house that I can’t decorate to make my own. We are, after five years here, going to have our own home. I’ve been trying to hold off dancing until we close. I think one of the first things I’ll do when we get the keys is cut a rug in that new space. And pour out prayers of gratitude. Then, actually cut that rug. Because it’s lovely, but carpet and children who eat aren’t a good combination.

Bonus update:
My man, while still being infuriatingly man-ish, is marvelous. He’s in a job where he can be fully himself. The kids rush out the door to greet him everyday. His wife finds his laugh lines charming and his muscles exquisite.

*My husband peeked over my shoulder and provided unrequested editorial advice. He felt that my statement excluded all others and had hurtful implications to the other kids (and him.) One of the more astounding parts of being a parent is being able to see and know each one as my very best, yet not my only. T really is the most extraordinary. And so are his siblings. They take turns being the cutest thing I’ve ever seen, the funniest person I’ve ever met and the one kid I would pick to be mine if I had the whole world to choose from. Just this morning I stopped and stared in the face of the most enchanting child I’ve ever met, absorbed in her beauty, captivated.  So. I’m ignoring the editor.

Me: Guys, sit at the end of the bed so I can get your picture together.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Friday, July 14, 2017

Why We Lie

Three months ago T Man had a routine, follow up appointment. At the beginning of our time I answered a series of questions on a tablet. I can't remember the details, but the questions focused on support for our family. Had anyone directed us to community resources? Had anyone ever asked us how we were impacted by our diagnosis? My answers were overwhelmingly negative. The implication was that those things should have happened. It was an affirmation that we had been very alone through our journey with disability. The questions triggered some grief in me.

Five years ago, the week we moved to our new state, T had his first anaphylactic reaction. Since then we have bounced from one mishap to the next. At each new physician, on each new intake form, with each meeting we are asked if we have a support network.  I lie. I say, "Yes, we have a few friends in the area and out of town family that is willing to travel in times of emergency." Today I was reminded why I lie.

Most days, life just is what it is. Some days, though, the stress wears thin my soul. I've had a number of overtaxing days lately and have thought of those painful questions. I want to read them again, at my leisure, in the privacy of my home, and process through the loneliness. Today I finally called the doctor's office to see if they could release the questions to me. Unfortunately, when the nurse called me back I cried on the phone. I stared at the ceiling and bit the sides of my tongue, but still I cried. I cried AND I told the truth. I told her those questions, by some magic, left me feeling more alone than I did before I answered them. I said I just wanted a copy of the questions so I could process my grief on my own. She asked me if I needed a social worker to let me know what resources are available. I told her no, what we needed was people. She said she would have a social worker call me.

Then she called back. Fortunately, my experience as a nurse helped me brace for the crap to come. She told me to call my primary, that they could help me. She wanted to make sure I wasn't in crisis, to be sure I wasn't at risk of harming myself or anyone else. She wanted to be able to chart that she had intervened in my pain and prevented disaster. I let her. I told her, using my cheerful voice, that I would call my primary. I went the extra mile to point out why that was such a good idea. I lied. She assured me again the social worker would call later. "Okay, sounds good!" I lied.

When I told M that I briefly lost my mind and told a healthcare provider the truth about our lack of social support he shook his head side to side. As healthcare providers we both know what folly that is. You see, the healthcare team doesn't actually want to know. Because they don't really want to help. They don't know how, and they don't want to learn how to. So, they ask the questions to make themselves feel better. But they don't want to know when you're weary. If you do confess to having more responsibilities than resources they turf you to social work. Social work adds to your responsibilities by giving you a long list of places to call and forms to fill out. No one quietly listens, allowing you to share your pain. No one says, "I'll take care of this for you." No one cares. So we lie.

In addition to the seven appointments that I'm going to navigate with four children next week, I'll have to answer a phone call from a social worker and tell her everything she wants to hear. If not, she'll flag me as unstable, or give me more work to do. She won't listen to my pain. She won't believe me that all I need is a copy of those damn questions. She won't give me the one thing I asked for. She'll give me more questions, more forms, more calls and threaten me with more appointments.

This is why we lie.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Friday, May 12, 2017


I don't recall when I started to hate baseball. Perhaps it was gym class when the horrid boys would criticize and hog the field. It's possible that being made to listen to games on the radio caused the thrill to leave. At some point in junior high I began to despise the sport. I watched my stepdad mow the lawn while listening to the game through headphones. My teenage disdain for anything adult-related helped seal the deal. It was a slow, boring game that I didn't like.

When I was in elementary school my family moved to a town that had neither friends nor family in it. Our first home was a townhouse with hardwood floors and 800 square feet of living space. Our part of the complex was built as a square at the end of a lane, with a parking lot filling the square. Sitting on the front porch, which faced south, we could see something like twenty doors. One of them had a family behind it that would prove to be friends.

The family consisted of a husband, a wife, and their two sons. The first summer we lived there, our days of school-free independence were marked by crossing the parking lot to be kept alive by the husband of that family.  Now as I reflect back, I don't know why he was available to watch his boys, plus us three girls, all summer long. Was he unemployed? On temporary disability from an injury? Did he work for the schools? Hmm.

Bruce (the husband/dad) gets credit for first teaching me baseball. He loved the Chicago Cubs, who were not the home team. Anytime the Cubs played, the TV was on. It felt like the Cubs played every single day of that summer. I quickly learned to love baseball. When we weren't watching the Cubs with Bruce, we were looking at his sons' baseball cards, or making fun of the sports cups they left lying around. Their front door should have been painted white with red stitching on it.

When my husband and I were newlyweds, we visited his old stomping grounds on the east coast. My father-in-law arranged a softball game while we were there. My job was to cheer for my man. They were a player short. I was recruited. No sports bra or baseball refresher course were included in my hiring contract. I'm sure I didn't spend the whole game at the plate, but that's all I can remember now. I couldn't hit a fair ball to save my skin. I begged my father-in-law to just call me out. He wouldn't. Toss, clink, sprint halfway to first, turn, walk back, pick up the bat; repeat, repeat, repeat. The horrid boys didn't verbally criticize but their patience wore visibly thin.

A few years later God gave us a little boy, Big N. The first sport he played was soccer. Ah, soccer. No making up games that were cancelled for weather, no sitting around picking at the grass. We all loved soccer. Then the Kansas City Royals made it to the World Series. We watched together. He got hooked. The Royals won the World Series. He fell in love. I tried my level best to dissuade him. It's boring, it's played in the hottest season, you have to make up missed games, and on and on. He was immovable.

So I waddled or dragged myself out to baseball diamonds over and over last summer. I had baby N in the midst of baseball season. There was a snack kerfuffle, it was blazing hot and Big N lost his hat. Baseball cards and sports cups litter my house.

My father-in-law brought us a documentary about baseball. In it, a surprisingly young Bob Costas explains that the slow pace is part of the charm of baseball. I had already figured that out. Being a soccer mom raises my blood pressure; being a baseball mom mellows it out. Big N and I watch clips on YouTube of amazing baseball plays, marveling together at the athleticism on display. He turns the living room into a baseball diamond and executes the most astounding unassisted triple plays you could ever imagine.

Last week I went on a solo road trip and listened to the Cubs game on the radio until I lost the station signal. Tonight I took my son to baseball practice and reveled in it. He encouraged his team mates, he played with the grass, he took counsel on adjusting his swing, he smeared dirt on himself, and he had the time of his life. I love how baseball brings out the best in my son. I like an excuse to get an hour and a half of fresh air three times per week. I love baseball again.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Friday, April 21, 2017

My Hand

Google has forced my hand; I am writing a short update. I have been attaching a copyright statement to the end of all my blog posts. As I updated, some of the posts republished. It's rather irritating that my blog is out of order now, but I don't have the spare brains to attempt to fix it.

The reason why I was adding copyright statements to the end of each post is I am wanting to try my hand at writing fiction. A story exploded within me a few months ago. It bounced around in my mind long enough that I started taking notes and writing down the attributes of its various characters. I researched details of the main character's job. I checked out books on how to write fiction. I planned on publishing it a chapter at a time on my blog.

As I have further contemplated the story that must be told, I have pushed it back for a time. Most everyone on the planet agrees that an author's first work is crap. If I'm going to churn out sewage I don't want it to splash on the important story.

In the coming months I hope to craft another story, to get the junk out of the way. If I do, I will publish it here. Though everything is *supposed* to be copyright protected already,  I want to put extra reminders out there for my three readers. Ya know, in case they are asked to write the dumbest sentence they can think of. I want them to come up with their own stupid crap, and not copy mine. ;-)

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Tuesday, April 18, 2017

Tissue Tradition

Winter winds whooshed past as we rode on the wings of the night. We sang silly songs, swapped shotgun at the 45 minute mark, and hunted padiddles.  We were little enough that our hair still whisped and floated around our heads when our hats were removed. Whoever was in back rotated her gaze between the cold countryside and Daddy's sparkling blue eyes in the rear view mirror. Whoever sat up front got to hold his huge, warm hand. We chattered about school and pleaded for snow. Missouri and December had long since agreed to cold weather, but snow remained an annual negotiation. 

Mommy drove the other direction in a quiet car. We didn't cry for her that night. Though small, we had lived long enough that the post divorce child swap had become unremarkable. We knew we would see her soon. Also, the thrill of Christmas lay ahead.

Christmas in Daddy's new life was magical. Christmas Eve was spent with Nan and Pop, an evening marked with wonder. New grandparents were one of our gifts when Daddy got remarried. Christmas Day our hearts pounded at the sight of the living room floor completely filled with presents. No tree in America was big enough to hold all the gifts. Christmas afternoon we went to Weesie and Papa's. They loved us to the moon and back, as grandparents are to do, and didn't change with Daddy's marriage status.

Christmas Eve we washed busy bodies and slipped into our best dresses. Our hair was styled for us. Daddy stacked the gifts gingerly in the trunk while Mom (the new one) got herself ready. We played carefully, guarding the fanciest clothes we had ever worn. Finally we piled ourselves as delicately as possible into the car. We pointed out Christmas lights and sang with the radio. The closer we got to Nan & Pop's, the more excited we became. Anticipation was a complex flower that bloomed within our hearts with petals of nervousness and joy.

Nan & Pop's house was enchanting. It was professionally cleaned, designed and decorated. The water in the back sparkled. The linens were coordinated with the dishes. The tree twinkled elegance. Music played softly while hors d'oeuvres awakened new taste buds. Our gifts were the most beautifully wrapped presents we had ever seen. The precisely tied bows were big and sparkly. The thick paper was lovely. When we opened them, carefully placed tissue paper folded back to reveal exquisite clothing. Looking into our boxes of Christmas treasures we felt cherished. 

The two little girls who rotated shotgun with me have little girls of their own now. (There are a few boys thrown in the mix, too.) My sisters each have two daughters. Today I matched tissue paper to the boxes that hold their new sparkly clothes. I folded the attire carefully then pleated the tissue paper around it. I want them to feel cherished when they look in their boxes.  

There's a solid chance it won't make their hearts soar like mine did when I was small. The clothes I purchased for them aren't the fanciest ones they own. Their eyes may not see the beauty of tissue paper. But I still poured my soul into it.

Even today I feel a surge of heat in my chest when I remember the thrill of being worthy of extravagance. I want my nieces to feel that.

I also feel an aching squeeze around my heart when I remember how my sisters and I received a third as many gifts as the other kids. I first realized I was poor when Nan & Pop treated me like I was. I feel like a fool now that I know they only gave so much because they were rich. It wasn't much to them.  It turns out that the same people who said, "God love ya" while giving us their cheeks to kiss also told our step mom, "Don't you love those girls, don't give them your heart." She listened to them. 

I never want my nieces to feel disposable, unlovely, or unloved. Though the primary responsibility belongs to their parents, I do have a small part to play in that. I play my part with all my heart. Rather ironically I use the best feelings from my childhood Christmases to guard those babies from the worst feelings I had. So I carry on the tradition of beautifully folded tissue paper.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

My Marvelous Man

My beloved husband turned 40 years old this week.

Throughout the day I sent him texts listing 40 things I love about him. Here is the list:

You let me sleep in without a hint of resentment or disapproval.
You're willing to be silly with me.
You laugh at my grandparents' antics.
You empty the dishwasher. A lot.
You take the fish off the hook for me.
How dangerous and beautiful you are with two swords in your hands.
You make great popcorn. And do it often.
You let me sleep with the fan on at night.
You are an artist.
The way you smile at AB.
You are kind, patient and honoring to the elderly.
You're ambidextrous.
The scar on your left hand.
You are owning and leading (redacted).
You have learned to fix a lot of things around the house.
The way you wrestle with our kids.
You are funny. Truly funny AND Dad funny.
You allow (and often encourage) me to feel whatever I'm feeling.
You are adventurous. In the culinary and the outdoor world.
You surprise me by coming home early.
You taught N the beauty and value of just-because-flowers.
You were brave and risked everything when you asked a white girl out on a date.
You aren't obsessed with sports.
You learned to swim as an adult.
You didn't freak out when our parenting trajectory changed.
You highlight as you read.
You let me pick at you.
You learned a lot about fixing engines.
You make delicious pretzels.
You roll and scrunch so I can cuddle with you at night.
You win almost every game we play. And do it graciously.
The one on one time you have with T each morning.
You are steadfast.
You love our nieces and nephews as much as I do.
You delight in me being me.
Your (redacted) is absolutely perfect.
You are kind.
You delve deep into the Word of God.
You gently call me to be a better person.
You lift us all to the throne of God with your faithful prayers.

M doesn't like going to restaurants because we have to bring our own food for T. He's not a fan of his baby boy being excluded. I found a recipe that felt very restaurant-esque though, seared mahi mahi. Instead of cake, I made his favorite dessert: pumpkin pie. I'm still trying to get a gluten-free, vegan, soy-free pumpkin pie perfected. I'll probably nail it in time for T to outgrow his allergies.

We wrestled with our babies for our after dinner entertainment. While he was plunking kids in the bathtub I cleaned the disaster area formerly known as the kitchen and dining room. After the kids went to bed we watched the movie Lincoln. He so enjoyed the movie that he watched the last 30 minutes standing up.

40 looks good on this guy.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Eye Thoughts

As I was heading to bed last night I could feel my eye. Normally I just use my eyes and forget they're in my head. But I was aware of my eye. It didn't hurt, but it was making its presence known. I was up later than usual so assumed I had presumed on my eyes too long with my contacts. My right eye was red when I removed my lenses, but not frightening.

This morning I woke up to a remarkably red eye.  Infection.

Here are a handful of thoughts sparked by my eye infection: 

First, I'm really glad I bought new glasses recently. My old ones were literally falling apart. They also boasted a 10 year old prescription. My new ones cost less thsn $50 including shipping & antireflective coating. Since I'll be wearing only glasses for a week I am happy I have glasses that actually allow me to see. Makes toting my babies around much safer.

Second, I'm glad I won't be hauling those babies to the doctor with me. I still have eye drops from a previous infection and am absolutely using them. Yes, saving money on a copay and prescription is nice. But what's truly beautiful is not sitting in an office for half a day with my posse. Especially now that it's cool enough for coats. Managing outerwear for my peeps is awful.

Third, I wonder if someone is pregnant. It sure isn't me. In the last ten years there have been eye infections in my house three times. Each time was when I was 8 weeks pregnant. If there is a birthmom out there I pray blessings on her. And i look forward to watching God move mountains. Because adoption is impossible right now.

Fourth, it turns out I'm vain. I took another picture which showed how red my eye actually is. But my nose looked huge. So I didn't post it. Now off to do some schoolwork with the one that caused my first eye infection 7 years ago...

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Tuesday, April 11, 2017

Twists and Turns and Antibiotics

The last 24 hours have felt like emotional tornado season. T Man developed a fever yesterday. He topped out at 102.7. I talked to the neurosurgery team twice. We dashed off to see our primary care doctor. No one wanted us in the germy ER, though.
He was tested for strep throat, his ears were checked for infection, his mama was peppered with questions. Meanwhile the incision on his back was growing red & warm. It seems he developed an infection at his surgical site. He woke up with fluid weeping from the incision this morning.
We saw someone from the neurosurgery team today. His sutures were removed, steristrips were placed, antibiotics were ordered, a follow up visit was scheduled. It was a relief to finally do something about his infection.
In between phone calls to doctors yesterday I got text updates on a beloved family member in the ER. That story ends well, too.
AB has two teeth about to break the gumline.
The neighbor is mad at the landlord but doesn't know it. She thinks she should be mad at us for something he did and let our guests know of her deep displeasure yesterday.
It's just been wild.
I keep rubbing my head. I want to take my family and run away to some place quiet. No doctors, no teachers, no therapists, no nurses, no central schedulers, no pharmacists, no care coordinators. Just for a minute or two. I'm thankful for them & their help. I want to be left alone, though. In a shocking turn of events, I'm tired of talking.
Today Principesa is boycotting naps.
N is saving the world.
T is curled on his side, snuggling with his stuffed George. His room is too dark for a photo, so just envision the cutest little thing you can imagine.
This season will end and soon be a memory.  Just like all other tornado seasons.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

T's in surgery

We're in the cafeteria.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Valley of Baca

I recently found myself crying on my dining room floor, hands lifted in praise, declaring my God to be good. {Because He is.}

There was no worship music playing in the background.

My Bible was not open nearby.

No one had called to encourage me.

I hadn't won the lottery.

The thing on the table that had started the cascade was my five year old's spelling list. He had completed it at a friend's house the day before. Pausing to finally look at his work I was delighted to see huge improvement in his penmanship.

The air caught in my chest, then escaped in a sob. One minute I was bringing order to my home, the next I was gasping.

I've been doing that a lot lately.

The reason my son aced his spelling at a friend's house is because I was at therapy with his brother. His brother's future is what dropped me.  The sudden realization that I will not be smiling happily at the same list in a few years was sad and strong. In the wave of grief I determined to bless the name of God.

I knelt on my kid-stained dining room floor and said what I knew to be true. "Father, you gave me this child. You knit him together in my womb. You made him exactly as he is. You gave him to me to love and raise. Please help me. He is beautiful. You are beautiful. You give. You give. You give. You are worthy of praise. Amen."

Then I stood up, wiped my eyes, and kept cleaning. Peaceful, joyful. Mildly irritated at the never ending collection of stuff.

I had two tear-free weeks.

This morning I cried twice.

As I was smearing moisturizer on my son I pondered how God uses children to grow us up. The pondering was not unusual; I host a variety of general musings in my head on a regular basis. But then my breathing became jagged and my eyes spilled over as I reasoned, "How selfish I must have been, that You gave me such a child." Guilt and inadequacy competed for center attention in my emotions. I felt sorry for my son, not for me.

He is not a punishment.
I feel like I am.

Later, as I left a meeting with my church to get better care in place for my son, I called my husband. Our oldest is at work with him today. They put me on speaker phone, so I ended up spending much more time with my child than my man. I explained what a buddy would do and be during Sunday School. My first born said, "I'll be his buddy!" I simply overflowed into flooding eyes again. My oldest already is a phenomenal buddy. Patient, kind, sharing his plethora of words with the brother who has so few. A better brother could not have been made for my son.

The tears catch me off guard. I don't know if they'll ever stop. I am thankful they are not wasted. They are doing something. Psalm 84 says this in verses 5-7:

Happy are the people whose strength is in You,
whose hearts are set on pilgrimage.
As they pass through the Valley of Baca,
they make it a source of springwater;
even the autumn rain will cover it with blessings.
They go from strength to strength;
each appears before God in Zion.

The Valley of Baca can also be translated the Valley of Tears. Somehow, my tears are being used to create some spring water, some blessings. My pain is not only seen, it is also purposeful. 

Besides that, this is not the Valley of the Shadow of Death. There is much sunshine here. Though there is a hardness to my circumstances right now, there is a rich, abiding beauty in my life. The pervasive undercurrent in my heart is peace and joy. I am content. I still struggle some days to grasp the real-ness of my reality. I still don't fully understand that I have a child with a disability. I do know  that I am wildly in love with my son. I understand how blessed I am to be parenting alongside my man. I trust God when He says my passage through this valley is a good thing.

copyright (c) Elizabeth, Bug's Beef. All rights reserved.

Saturday, January 14, 2017

Accidental Ambassador

If ever I get myself in trouble, it is for action, rather than inaction. Most major regrets follow the times I have shot off my mouth, rather than the rare moments I have remained silent. 'Doing' is my default. Yet I have mellowed in recent years. Life has gifted me with a bit more silver on my head and circumspection in it. I hold my tongue. I look before I jump. And every now and again, I think things through before acting.

Even as a young woman, with my naive hot-head-ed-ness, I recognized there were some things I didn't know a dang thing about and should, therefore, shut up about. These issues usually were massive social problems that needed to be transformed. Sometimes it was a misunderstood body of knowledge. Injustice and ignorance were mountains too tall for me to scale. Yet now the years find me discussing them.

I have overcome my reticence because these things are important. I know I possess a lone, unqualified voice; but I can not wait quietly for the experts to be invited into my circle of influence. Silence is not okay. My hope is that I can get people thinking or feeling uneasy. If those who listen feel a bit abashed perhaps they will do some research. That research will lead them to voices that know. Those voices speak better than I can of the injustice or ignorance they live with. Those voices need to be more than heard, they need to be heeded.

The following is a brief overview of those things which need knowing.

Chinese American Culture

I am married to an ABC (American Born Chinese.) I have absorbed so much wisdom from his family that we often times joke that I am more Chinese than he is. But the deep truth is that I am a white girl who was raised in the middle of the United States of America in a comfortable suburb. I didn't know that China has one written language, but many spoken ones. The thrill of dim sum carts rattling up to our table, loaded with extraordinary cuisine was a paradise unexplored before I met my man.

Did you know that the Chinese invented almost everything worth having? Today's Americans think that because we landed on the moon and formed gadgets with fruit on them that we are the inventors of the world. That is not so; we share the glory of genius with many others. Some know that China has given us gunpowder and silk, but that is not all, my friend. To learn more about the many treasures the Chinese have created, read this book.  I'm particularly grateful for toilet paper.

Then there's the gravity of being an ABC: too Chinese for America, too American for China. And why/when did we start lumping all Asians together? For one man's perspective, read this book. Did you know that the Border Patrol was originally created to keep the Chinese out of America? The abuses of Chinese immigrants should make your heart slow to a heavy, dreadful thud. To learn more about the complex history of Chinese Americans, read this book.

Disability Language

I have been a staunch advocate for people first language for as long as I can remember. As a nurse, I phrased any necessary mention of a person's disorder as "she has diabetes" or "he has schizophrenia." I avoided identity first language, which refers to patients as an extension of their disease with terms like "diabetic" or "schizophrenic." I deliberately referenced patients as a person with the disease, rather than the disease itself.  I intentionally use people first language still.

But my deeply held preference for people first language was taken too far. Once upon a time I argued with a family member who has a disability about how he identifies himself. This beloved man prefers identity first language. Hearing him attach an "ic" to the end of a disorder and proclaim it as his identity unnerved me. I had a visceral reaction. I told him he was not the disease, he merely had it. He patiently, but strongly informed me, "No, I am it."

My grandmother had polio as a girl. The virus swept through her body when she was three years old, leaving permanent damage to her right foot and leg. She has told me about spending months in hospital wards, seeing other children subjected to iron lungs. She told me about the multiple surgeries summer after summer, trying to limit the impact of disability. She walked once, without her brace, to show me how her knee collapses and slides in with each step, causing a pronounced limp. She also told me she prefers to refer to herself as being crippled. Because of the damage to her leg, and how it was acquired, she thinks the term "crippled" best describes her condition.

I choke on the word "crippled" and can not bring myself to say it about my grandmother. But it would be a grievous arrogance for me to tell her how she should identify herself. When I look at my treasured family member I don't see disability, I see him. The pompous gall it takes to tell him he must use my eyes when looking in the mirror is unacceptable, though.

As the mom of a child with disabilities I want the world to see him and identify him as a person first. And until he tells me otherwise, I get to do that. But should he tell me he prefers to use identity first language, I will honor his right to chose that. To read other people's thoughts on language choice, click here.

When you, dear reader, speak to or about someone with any disorder, please refer to him or her as a person first. If the person prefers identity first language, then you may adapt your language to honor his or her wishes. But always error on the side of respect for the individual.

Disability Resources

Oh boy. This post is already so long, and I want to save some steam for the last topic. I will be succinct: ask someone who needs assistance with any manner of disability about the availability of help, the process to acquire it, and the attitudes of those who are tasked with providing it. Es no bueno.

African American Infant Mortality

Did you know that twice as many African American babies die in their first year of life as do Caucasian babies? I am hoping that information just jolted you. I had no idea America was burying so many of her African American babies until I became friends with Ms. Payne. If you aren't horrified, then we need to have another conversation about how you've been trained to devalue some lives.

This isn't just a statistic. This is a mother holding a limp body, sobbing from her soul, wanting to jump into the grave with her child because one so small and beloved isn't supposed to be all alone. But it's more than one mother; it's thousands.

If you are thinking that the babies die because their mothers don't take care of them, then you need to keep scrolling down the page of the first link and see that most die from causes linked to poor  maternal healthcare. Also, we need to consider why health disparities don't bother you. And even, perhaps, visit the thought that different styles of parenting are just that: different.  African American mothers ought not have their competence evaluated by how much they behave like Caucasian mothers.

If you are supposing now that the connection to poor maternal healthcare is proof that African American women are lazy and just skip their doctor's appointments, scroll some more and see that mothers want excellent healthcare, but it is not available to them.  You also need to spend a minute pondering what it is that causes you to blame the victim for suffering loss. They are losing their babies, and they are losing their own lives. Our nation is losing its mothers to death.

I don't know how to weed out racism, stop death in its well worn tracks, or improve disability care. But I know that staying silent isn't working. Injustice and Ignorance are still unscale-able mountains. But I know One Who can move them. A Bible verse that has been prominent in my life the last number of weeks is Micah 6:8 "He has told you, O man, what is good; and what does the LORD require of you but to do justice, and to love kindness, and to walk humbly with your God?" Perhaps as I walk humbly and love kindness, God will teach me how to do justice.

Wanna come with me?

copyright (c) Elizabeth, Bug's Beef. All rights reserved.