Category Archives: Lele Marie

A Rose By Any Other Name | My Thoughts On Disability Language

I was a Special Education teacher back in the day. Before kids. Before Adelaide’s first MRI. So I took class after class focused on disability law, people first language, and being politically correct at all times. I was once involved in a graded debate about the appropriate use of disabled vs. differently abled. 

I left college scared to death that I would use the wrong word and offend someone. Because I had been conditioned that only certain terms were acceptable. And certain terms were deplorable. 

Last Summer, we were at Silver Dollar City. Adelaide was in her wheelchair, enjoying life. The attendant asked if we had her special riding pass booklet, which shows the rides and attractions she can legally ride. It’s catered to her specific abilities. Graham answered, “We’ve got her book! She’s disabled!” 

“You should use other words for her. Maybe that’s offensive.” A stranger in line corrected Graham. I was about to step in when Graham looked this man in the eyes, and stated in true Graham-fashion, “I don’t know what ‘offendisive’ means, but you see da wheelchair, right? Cuz she’s in one!” 

I have no idea if this man had a disability, cared for someone with a disability, or just liked butting into random conversations while in line at a children’s play area, but I was taken back to my college days. This stranger never once smiled at Adelaide. Or greeted her. Or asked if she was enjoying herself. His only interaction with us was correcting a child. 

Our family uses many terms for all our kids. Disabled, disability, non-disabled, neurodisabled, nonverbal, wheelchair-user, normal, atypical, neuro-typical, verbal, special needs, and many others. I cater our words to the occasion. Forms, discussions with doctors, interactions with 90-year-old women at the grocery store. Because I prefer that people interact with us rather than giving off a vibe that we’re going to judge you for using the “wrong” word. 

“Is she retarded?” An elderly man with oxygen and a cane asked me, while we were visiting Bob in a transitional care unit. Bob was just a few weeks from going home on hospice. Everyone at the facility loved when Adelaide visited. She was always clapping and laughing. I didn’t say, “You aren’t supposed to use the r-word anymore.” I knew his heart and he genuinely wanted to know about Adelaide. “She has lots of brain issues and can’t speak or walk, but we aren’t sure what she’s thinking. She loves counting!” Then he stooped down to count with her. I later found out no one visited him. Seeing Adelaide brought him joy. 

Imagine if I had said, “We no longer use that word. If you were on the internet, you would know this. And some people don’t want you using Special Needs or disabled, either.” 

Talk about a conversation killer. With a lonely veteran of a foreign war, who just wanted to chat about Adelaide. 

I’m not saying you should use the word retarded. I’m saying that Dave and I focus more on engaging in conversations with people who want to know about Adelaide, and we use a variety of language to do it. 

When a small child comes up and asks, “What’s wrong with her?” I never say, “The word ‘wrong’ is a bit harsh.” I squat down next to Adelaide’s wheelchair and answer, “When she was growing in my belly, her brain formed a different way than yours did.” And I continue from there. 

If I knew what Adelaide wanted me to say, I would say it. But I don’t. Dave and I are her voices. We speak for her. She is nonverbal. I was once told in a forum that the term ‘nonverbal’ is offensive. It was news to me. I still use it for my own child. And I’m sure I use lots of other words that would make college professors cringe. But this is my world. A Special Needs Mom raising a kid with disabilities. And I’ll use the words I want to use to teach people about our family. 

I long for the day when people see Adelaide and greet her at Silver Dollar City, instead of making assumptions about which buzz words she would choose if she could talk, sign, or use a communication device. She does understand “Hello!” and will often return the greeting. So let’s start there. Maybe focusing on the person is far more important than focusing on people first language. But that’s just my two cents. 

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Adelaide Walks For Water

In honor of Adelaide’s 2nd wheelchair anniversary and International Women’s Day, we are participating in our very first family 6k! 

On May 6th, Adelaide will lead the way in her wheelchair while our entire family walks 6k to raise money and awareness for children all over the world who walk 6k everyday to find dirty, unsafe water. 

Adelaide wants you to join us! You can sign up to walk/run/push a stroller or wheelchair for 6k wherever you are in the world! You can donate toward our fundraising goal! You can commit to praying for the children whose lives will be changed by this walk! 

Have a blessed Wednesday! 

Team Adelaide 

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I Regret Saying “I Love You”

Dave and I started off wobbly. That’s the best word for it. When I saw Dave, it was literally love at first sight. But Dave saw me as a friend. I broke up with a nice guy, because I was so in love with Dave. Dave went on living his life as normal, but added in my friendship. 

It was awkward. I know I came off as desperate. I was fearful that the person I wanted to marry would never want to marry me. 

After months of being friends, I decided to tell him that I wanted more. I had finished some book about being brave and not operating out of fear and who knows what else it said. So I told him I wanted to be more than friends. I told him I was interested in dating him. I will never forget the look on his face. It was a mixture of confusion and I-knew-this-was-coming and “Oh shit.” 

He was not in the same place. I thought I had been brave, but I had actually been cowardly in trying to make something work. 

So we stayed friends and it was everything I had feared. And I felt like a rejected loser. 

Later, Dave decided he did want to date me. Asked me out in a beautifully romantic way. A boy at my window at 2am. Asking through the screen, to a chorus of cicadas and crickets, if I would date him. I found flowers and music in my car the next day. 

But I was terrified he would change his mind. I had a difficult time enjoying those early days of finally being what he wanted. I figured he would snap out of it. Remember he didn’t want a relationship. Go back to his dreams of traveling the world, becoming an academic, sitting next to a fireplace, surrounded by books. A lifelong bachelor. 

But our first kiss told me he wasn’t playing around. When we had been friends, he mentioned in passing that he wouldn’t kiss a woman again if he didn’t know that he loved her and wanted to marry her. So our first kiss was more than lips touching. It was a proclamation. 

And it should’ve been enough. But my love language is Words of Affirmation. I was eagerly anticipating those three little words. And they were never said. Days turned into weeks. I started to get nervous. 

Certain friends didn’t help. Many of them weren’t mature when it came to relationships, and they planted seeds of doubt that I watered with my own insecurities. They said he was going to change his mind. He wasn’t committed. I was more invested than he was. 

None of it was true. Dave’s actions were the opposite of all those things. We didn’t kiss very often, but our kisses were indescribable. He planned thoughtful dates, with all the details screaming “I love you!” 

It wasn’t enough, and I ended up doing something I regretted from the moment it happened. And I couldn’t take it back. People I shouldn’t have been listening to told me he didn’t love me. So I planned a special date to get an “I love you” out of him. It was desperation. And it didn’t end up working. The setting, the mood, none of it. I sat there waiting for him to declare his love, and he couldn’t stop talking about the stars. So, I forced the moment.

“I love you.” I don’t know what I was expecting. But his eyes were sad. I had fabricated all of it. I meant what I said, but the timing was wrong. Everything was wrong. I had only done it out of fear. After several seconds, he said, “I love you, too.” And I could tell it wasn’t how it was supposed to play out. I had stolen something from him. 

I don’t know how long it would’ve taken him to initiate it. I regret that I basically butchered a milestone. All because I bought into a lie that his lack of words meant a lack of love. 

Dave doesn’t always say the words, but he always shows it. Always. His love language is Acts of Service. He can go three days without initiating an “I love you,” but he’s never gone even one day without showing me. 

I was too immature then to see it. I got caught up in needing to hear the words. I cringe when I think about how infantile I was about all of it. 

Dave says “I love you” when it matters. And he always says it back to me, even though I throw it around several times a day. He’ll be going to the grocery store, and I’ll say, “I love you! Be careful!” He will always respond, “I love you, too. I will.” He never withholds reciprocating the words. He just doesn’t usually offer them first. But, sometimes, when I’m leaving, he says, “I love you.” Or he says it completely out of the blue. And 33-year-old Lyndse knows whether he says it or not, that he does. He loves me. 

The week of Valentine’s Day 2009, we found out we were pregnant. Our first child. We were elated. One of the best days of our lives. He took me in his arms, kissed me, captured my gaze in his, and said, “I love you so much.” And it was perfection. 

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She’s Getting So Big

Adelaide is no longer a baby. Or a toddler. Or even a preschooler. We’re about to fill out her kindergarten enrollment packet. She’s off to elementary school soon. A k-4 classroom. 


And it seems like all these new “big girl” issues came at us quickly. Wasn’t she just a baby?


She outgrew normal diaper sizes. Overnight. The Pampers size 7 we buy from Amazon are too small. She wears cloth at home, but needs disposable for school, church, and outings. We’re looking at medical diapers. For big kids. I need to find a good balance between effectiveness and cost. And hopefully something that I can get through Amazon on subscribe and save. 


I was dressing her a couple weeks back and shouted to Dave, “There’s something wrong with her knees!” Then I realized it was ingrown hairs. Since she crawls and knee-walks, she’s broken off all the leg hair on her knees and caused ingrown hairs. I have no idea how to deal with this issue. At all. And I used Google to find zero answers. Early puberty is an issue with some neurodisabled kids, but no one explains what to do with ingrown hairs. 


Adelaide needs a new bed. She’s outgrowing her crib. Since we have zero coverage for medical equipment, we’ll be building our own bed. A twin with large railed walls all the way around. And a gate, so she can crawl in and out by herself. But the tall rails and closed gate will keep her in until we are ready for her to get up. This morning, she woke up at 2:30am. We need to keep her contained, as I listen from another room. 


We’re constantly outgrowing clothes and figuring out which outfits will work for therapy and wheelchairs. Her weight and height are disproportional, so it takes some creativity to dress her. 


She’s outgrown her highchair and bathseat and I don’t even know where to start on those. All gear for Adelaide is out-of-pocket, so I’m looking at all our options and seeing what we can get used or discounted. 


None of this is life-altering, but it’s definitely getting tougher to deal with Adelaide’s issues. She’s truly becoming a big girl…and all that entails. 

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Five Minute Friday | Breathe

Ready, set, go…

Last year, I was tucking Graham into bed when he started a difficult conversation. One I wasn’t yet ready to have. We had just lost Laurence and Flannery the day before. 

“Mama, I’m so sad our babies died, but I’m glad I get to sleep in yours bed. How long we gonna be so sad? And can we be sad and happy? Cuz I wanna be sad sometimes and happy lots of times. Will we get babies again in your belly? Can we be mean to people? Cuz I wanna be mean to people. Am I still your favorite boy? I’ll be okay if you get more favorite boys. I’m so happy you aren’t in da hospital again tonight cuz I missed you last night. Someday you gotta tell me about the dead baby surgery. Da hospital was pwobly too quiet, huh?”

“We will be sad when we need to be sad and happy when we want to be happy. We can be sad as long as we want to be, as long as we don’t hurt ourselves or be mean to other people. That’s not being sad, that’s other things that aren’t showing God’s love to ourselves and others. I don’t know if we get to have other babies in my belly. But I love all five of you so much! And, yes, you’re still my favorite boy. And I’m so happy I’m home with you. The hospital was very quiet, which was nice. But I missed all our noise.”

“You forgotted da surgery part.”

“When you are older.”

How that was exactly one year ago yesterday, I’m not sure. Time is so strange when you’re 33-going-on-34. 
We made it through the anniversary of the twins’ birth and death. I had been dreading February 1st, but it ended up being easier than I thought it would be. Partially because my kids kept me completely busy and I barely had time to think about it. And partially because I decided to place zero expectations on myself. 

I didn’t make plans to commemorate it at all. No tattoos. No visit to the cemetery. No “one year later” post. Just regular life. Just breathing in and out. 

My word for 2017 is breathe. For whatever that’s worth. It came to me at the very end of December. 

Yesterday, in conversation with Nicole, while our kids were running through the house laughing and screaming, I realized I had found my word for 2017. Nothing profound. But the last several years have been more difficult than not, and I’m choosing to focus on the basics in the new year. Breathing in my husband. Breathing in my children. Breathing in new baby smell. Breathing in friendship. Breathing in the Holy Spirit. “Nicole, I think next year is my year to breathe.” She nodded, then we cleaned some weird orange goo off Graham and Thatcher’s hands, changed Adelaide’s diaper, hunted for Chandler’s missing drink, and averted a near disaster as Bess stuck her head into a birdcage. I was breathing in motherhood, and I felt alive.

I breathed my way through February 1st, the anniversary of losing two children. And I breathed my way through February 2nd, the anniversary of coming home from the hospital empty-handed. And I breathed my way through preschool drop-off and pick-up. I breathed my way through homeschool and pottytraining and dishes and laundry and calling in prescriptions. And I breathed my way through making room for another baby. A baby brother. Who probably eased some of the pain on February 1st. But in the words of Graham, “Getting a new baby doesn’t make me miss our dead ones less. I wish we could have all free of dem!” We’re all breathing our way though pregnancy after losing children. One breath at a time. 
Time’s up.

Join me over at katemotaung.com with your own five minutes of raw and unedited thoughts on the word “breathe”…a safe place to share. 

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A Tale Of Two Cousins

Bess and Melody started pottytraining on the same day. Purely coincidental. 

One took about 10 days to fully train. She went from diapers full-time to panties 24/7. No nighttime accidents. 

The other waits until mom leaves the room to remove panties, put on sister’s diaper, pee in the diaper, remove the diaper, toss it into the trash can, and put panties back on. 

You’ll never guess which one is which…


You’ll never guess. 

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Year Of Fiction 

Most of my reading from 2012 to 2016 was non-fiction. How to be a better mom, blogger, baker, editor, believer, survivor, wife, organizer, teacher, cook, budgeter, dresser, copywriter, DIYer, friend, and the list goes on. 

So I declared 2017 as my Year Of Fiction. 

For 365 days, all my book choices would be fiction. 

Last night, I read 35 pages of a dear friend’s sci-fi manuscript. It was love at first page. 

I’m also currently reading a few mysteries, several classics, a novel about post-Civil War California, and rereading some short story collections and poetry anthologies. 

I’m obviously still reading my fair share of non-fiction with Graham, but all my silent reading time has been a lovely escape. 

What’s on your reading list this year? Might I suggest Sense and Sensibility? No Year is complete without a dose of Austen. 

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Jokes | Elizabethan Quips

Bess followed in Graham’s footsteps, and started a comedy tour. Where I’m the only audience member. All my waking moments. 

“Mommy, what did the ice pop say to the other ice pop?”

“I don’t know. What did he say?”

“He’s not a he. He’s a her. She’s a girl ice pop asking the question. And she said to the boy ice pop, I think he’s probably 4 years old, we’re too cold and we’re gonna freeze to death in this freezer! We need a fire!”

“Mommy, what did the basketball say to the other basketball?”

“I don’t know! What did it say?”

“We are both basketballs.”

“Mommy, what do you call a tv that’s on UmiZoomis?”

“Not sure, sweetie.”

“UmiZoomi tv shows on our tv.”

“Mommy, what do you do when you have poop in your diaper?”

“Put it in the toilet and flush it away!”

“Not if you’re an ogre! I squished it all in my diaper and need lots of wipes. This wasn’t a joke. I really did it!”

“Mommy, what did the flowers say to the bees?”

“I don’t know. What did they say?”

“Nothing. Flowers don’t talk. I’m surprised you don’t know this. You’re sposed to be a teacher.”

“Mommy, what do I want to be when I grow up?”

“A comedienne?”

“NO! I wanna be Bowser Jr! I want to be his dad, but I’m too little.”

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Thanks, but… | unedited thoughts on body image 

“Dave, a guy at Walmart hit on me today. Who on Earth would find this attractive? A stupid person, I guess.”

“Lyndse, you just called me stupid. I obviously find you attractive. I chose to spend every day of my life with you. I chose you over becoming a scholar with a gigantic library and a fireplace. I chose you over traveling the world. I chose you knowing you’d gain weight when we had babies. Every time you insult yourself, you insult me. Because I chose you.”

It was a turning point in our marriage. I’ll never forget the look in his eyes. He couldn’t understand why I couldn’t grasp how beautiful he saw me. 

Later on, when the repressed memories of my abuse resurfaced, it started to make sense. It was textbook stuff at that point. After decades of abuse, any positive self-image had been altered. Destroyed. 

As I progressed on my journey of healing, I was able to start seeing what Dave saw. What he had chosen. When he would compliment me, I would thank him. 

In the early years of our marriage, I would pair a thank you with a but. 

“Lyndse, you look gorgeous today.” 

“Thanks, but I’ve gained so much weight.” 

“Sweetie, your hair is beautiful today!” 

“Thanks, but I look so tired. My face looks horrible.”

“Lyndse, your outfit looks so great on you.”

“Thanks, but these pants are a size bigger than I was wearing last month.”

The irony: my love language is words of affirmation. I craved those compliments from Dave, even when I couldn’t receive them. It was frustrating for both of us. 

In the last three years, so many things have changed for us. When he tells me I’m gorgeous, I say thanks and kiss him. When he tousles my hair and calls it cute, I thank him and smack his butt. When he comments on my outfit, I pair a “Thank you!” with a little spin. 

I don’t look much different, honestly. My weight has fluctuated about 75 pounds in our 10 years of marriage. Up and down. I’ve had seasons of amazing haircuts and seasons of us not being able to afford haircuts. My wardrobe has definitely improved, but I’ve always had stuff in my closet that worked. I just went from a few things to having an entire wardrobe that works for me. 

What’s changed is my heart.

I’m still changing. My heart is healing. I’m still learning to capture all the negative thoughts about myself and replace them with truth. But it’s happening more and more each day. 

I’m blessed that I’m married to a man who didn’t give up. On our wedding day, he told me, “You are so unbelievably sexy.” And I answered, “Thanks, but I gained 10 pounds last month.” But Dave never gave up. He never stopped trying to tell me the truth, when I couldn’t tell myself. 

After 13 1/2 years together, I see the same look in his eyes that he had when I was a size 0, well-rested, with zero stretchmarks, and perfect hair/nails/clothes. Scratch that. The look is different. It’s more. His eyes then were filled with wonder and new love and curiosity. Young and waiting for a wedding night. 

Now, he looks at me like a man who has climbed peaks and gone through valleys. A man who gave up dreams for new ones. A man who finds me irresistible, with stretchmarks and jiggle and dark circles under my eyes. Thousands of nights together. 

We’ve lived life. A life that’s unique to us. We’re the only two people on this planet who know what it was like to see Graham for the first time. The only ones who know what it’s like to parent Adelaide. The only ones who know the exact pitch of Bess’ voice. The only ones who know the specific hurt of burying Laurence and Flannery. And the specific joy of seeing Lewis inside my uterus, when we all feared he wasn’t. 

I still have such a long way to go, but each sunrise gets me closer to my goal of seeing myself the way my husband sees me. The way I see him. When I tell Dave, “You look hot today!” He smiles and thanks me. And gives me a kiss. And that’s the way it should be. Two healthy people loving one another. Growing older and wiser and getting wrinkles and buying jeans that fit without caring about the size on the tag. 

 

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Drive You Crazy | A Boudoir Session

I have this idea to do a boudoir session for Dave. My friend makes custom aprons, so I figure it could be sexy kitchen stuff. 


But then I remember I’m not really a sexy kitchen person. Or even a kitchen person. 

I’ve come up with the idea of a “Drive You Crazy” boudoir session. Where I would be in the sexy apron, with the sexy poses, but doing things that actually drive Dave crazy. 

All his kitchen pet peeves. 

Sexy photos of me using steak knives for everything. Cutting all foods, opening packages of food, opening packages from Amazon. Prying open things. Killing a spider. Steak knives are super versatile, and we have 8 of them! Or 10? Not sure, but I use most of them throughout the day. 

More shots of me cutting things on plates, because we have a plethora of plates and only one cutting board. I don’t have time to wash the cutting board all day long. 

A couple of me leaving food in Adelaide’s highchair and forgetting to clean off her tray. 

An entire series of shots involving me kicking food out of the way, to the edge of the kitchen, to avoid cleaning it up. 

Don’t forget when I put an unrinsed dish in the soapy water. Letting the food contaminate the clean water, and possibly clogging our drains. 

I need some sultry shots of me not completely drying off the dishes from the dishwasher. And it will be even better if I’m using a new towel from the drawer, when there was a perfectly good towel right there. 

I can’t forget the homeschool materials out hours past our school day. Those unifix blocks scattered everywhere and markers rolling to the floor. Falling into the crumb piles. 

The piece de resistance would be me putting leftovers into containers much too large for the food going inside them. I have no spatial reasoning skills, and I refuse to put those beans into a smaller container once I realize I grossly miscalculated the size of Rubbermaid needed for the job. 

Just an idea I’m tossing around. 

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