Tag Archives: Adelaide

Worth Is Not Based On Productivity 

“Will you always take care of her or choose that assisted suicide thing? Will she ever do anything for the rest of us? You know, contribute?” I stared at him with my mouth just hanging open.

And that is what is wrong with Western culture. We’ve raised a couple of generations to believe that we give up on the people who make life more challenging. That worth is based on productivity. That we get rid of what isn’t like the majority. 

These are the very people we should be protecting. Adelaide requires round-the-clock care and observation. She can’t get her own food, use a toilet, walk, talk, work, flip herself over to keep from choking on her vomit, dress herself, or tell us where she hurts. She can’t stop her seizures. Doesn’t that mean she gets an extra measure of compassion? 

A gorilla died and the world went crazy. Alligators died and the media couldn’t stop talking about it. Their ‘right to life’ trended for days upon days. But more than 50 people in Adelaide’s short life have voiced their opinions about her deserving abortion in my womb or assisted suicide/euthanasia when she’s “stopped making progress”…and that is scary.

It’s unfathomably disturbing that we don’t value the ones who need us most. The vulnerable. 

Adelaide’s life is no less worthy than anyone else’s.

But Graham’s generation is learning the opposite. That people can be different than you, but only if they can take care of themselves. That we don’t do the hard things when there’s a seemingly easier way out. And that it’s better to be dead than to be disabled. 

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Our Wheelchair Anniversary

Last March, we bought a wheelchair. We got it 50% off. It arrived in several boxes and I spent 18 hours, over 2 days, assembling it. I kept crying. Not because Adelaide couldn’t walk, but because I kept dropping the Allen wrenches. I think I dropped them two hundred times.

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Last Wednesday, Adelaide had 2.5 hours of physical therapy at school. She spent half an hour walking the halls with assistance. We then spent two hours in a wheelchair clinic. It’s our 7th adjustment to this chair in one year.

Even though Adelaide has taken some steps, she is still a knee-walker and a crawler. And we need her chair to meet her ‘right now’ needs, even while we dream about a future sans wheels.

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But Adelaide does everything in her own time. Even sleeping. That’s why we bought a tilt-in-space chair last year. There is no wrong time or place to nap. Not when you’re Adelaide.

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Grahamism | Corn Pops

Two years ago, Graham spent the day with my mom-in-law. The girls and I spent a fun day doing absolutely nothing. To this day, I make to-do lists for the event that I am short a child, but my motivation goes out the window as I wave goodbye. I throw my pj pants back on and throw the list in the trash.

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I did prep for a yard sale at my mom’s house…aka “The Weekend When That Woman From My Mom’s Neighborhood Tries To Talk Me Down On Every Single Item”…to help pay off some of Adelaide’s medical bills.

It was a pretty uneventful day. I nursed Bess every 90 minutes, changed cloth diapers, and then Graham came home right before dinner.

“Adelaide, I misseded you so much. I can’t even tell you how much I misseded you, because it was so much.”

So sweet.

“Elizabiff Mae, I love you so much and I want you to wake up and tell me dat you love me, too. You are so beautiful.”

That is too precious.

“Mama.”

“Yes, Graham?”

This is going to be good.

“Don’t eat all my Corn Pops cereal from Grandma Linda.”

Only 4 years old, and he had unearthed a parenting secret centuries old: Moms eat all the good cereal after their children go to bed.

It’s one of the saving graces of being a mom. Cereal and tv with the captions on. No one grabbing your spoon, begging for a taste. Just you, Corn Pops, and Detective Hathaway.  Solving crimes at Oxford.

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She Walked

We’ve waited more than three years for Adelaide to walk. You would think 1,000+ days would’ve been ample time to prepare me for that moment, but I was breathless in the parking lot when her paraprofessional gave me the news. And then I was jumping. Crying. Shouting. Giving Adelaide kisses. The next day, I saw this video of her first steps. I have watched it close to three dozen times. Adelaide walked for the very first time on January 27, 2016.

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And the next day, she tripled her distance.

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She walked.

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Five Minute Friday | First

Ready, set, go…

In December, Bess said “I love you” for the very first time. To Adelaide. She hugged her big sister, said “I love you, Adelaide!”, and left Dave and I speechless. I can’t quit talking about the beauty between siblings — those with typical development and special needs. Bess shows so much compassion to Adelaide. She shares toys with her. Two-year-olds don’t naturally offer their favorite snacks to another child, but Bess willingly gives her food to Adelaide. She brings things to Adelaide and presents them with glee and pride. She greets Adelaide every morning. “Good Morning, Mama! Good Morning, Adelaide!” When the naysayers frown upon having more children, I’m just going to show them my daughters. Bess could’ve professed her love to anyone. She chose Adelaide. And she chooses her everyday.

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Time’s up.

Join me at katemotaung.com with your own five minutes of raw and unedited writing. It’s a new year!

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Big Sisters

Graham: “Mama, what are yous doing?”

Me: “I’m going to take a picture of the girls in their Big Sister shirts!”

Graham: “Well, you alweady know dis is not gonna work. Just give up now.”

big sisters 1big sisters 7big sisters 6big sisters 3big sisters 2

Switch sides?

big sisters 4big sisters 5

And we’re done.

#KeepinItReal

 

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The Cheerleader Returns

Adelaide had a low-grade fever yesterday morning. So no school. And she was furious with me when she finally got up at the crack of 9:50.

“Addie sool?”
“Sorry, sweetie. No school today.”
“ADDIE SOOL.”

The ‘you are a big, fat liar’ face was almost too much for me to handle.

Bath on Monday night means school on Tuesday morning. Adelaide knows her routines.

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On Monday night, when she saw me setting out her disposable diaper, orthotics, and clothes, she cheered, “Addie sooooool!”

18 days of Christmas Break. And Adelaide fussed every time we passed her school and didn’t turn into the parking lot.

Today, I woke her at 7:30 with Keppra in her crib.

“ADDIE SOOL! ADDIE SOOL! ADDIE SOOL!”
“Yes, it’s time for school!”
“WHOA! WHOA! WHOA!”

After her bottle, she crawled to the door. She sat there chanting, over and over again:

“1! 2! Addie sool! 1! 2! Addie sool!”

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After 19 days, we loaded up and drove to school. She cheered when I turned into her parking lot. She smiled when she saw her paraprofessional. She tried to will herself into the building…craning her head and trying to get her hands to her wheels.

“ADDIE SOOOOOOOOOOOOOOL!”

I think she likes it there…

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Caring, Sharing {Everything That We Are Wearing}

Our friend, Emily, made this gorgeous blanket for Adelaide.

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Bess keeps stealing it.

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“Lord help the mister who comes between me and my sister
And lord help the sister, who comes between me and my afghan!”

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I Am My Christmas Tree

Our Christmas Tree is 3 feet tall. We’ve talked about getting a full-size tree, but we don’t have room. And Adelaide would eat it. We normally have two 3 foot tall trees. One with Adelaide’s birthday theme, and one family tree.

We have always decorated a birthday tree for Adelaide. Poor December baby. It’s about the worst to share a birthday month with Baby Jesus. People try to combine your birthday and Christmas presents. No one can attend your parties, because their December calendars fill up months in advance. (I actually texted our families in August with Adelaide’s birthday party date and an approximate time.) As a consolation prize, Adelaide gets a tree at her party.

But it’s more than that. We didn’t know if Adelaide was going to live. They couldn’t tell us if she was going to grow up. So I wanted to decorate a tree for her birthday, just in case it was her only birthday. And the tradition stuck.

This year, I almost cancelled her party. Like I always do. But I didn’t. And her Breakfast at Tiffany’s tree was beautiful. We had to move it to the kitchen island after Bess tried to hold it. Elizabeth’s love language is physical touch, so she is obsessed with hugging everything. “I’ve got you.” The Christmas tree barely survived its first embrace. I moved it to the kitchen.

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I wasn’t going to decorate the house this year for Christmas, because I’m having a hard time with so many things. Our first Christmas without Bob. My dad tried to commit suicide the day after Christmas when he was exposed as a child molester. Every gift guide for a 4-year-old girl is comprised of 500 things Adelaide can’t do.

And money. December is the hardest month for families with special needs kiddos. Our health savings and tax-free accounts are all used up by now. Medical bills are piling up. We’re counting down the days until tax return to pay everybody off. It’s a crazy cycle…one we are trying to break…but many families are familiar with it. Thankfully, Dave and I are only buying gifts for our children and the matriarchs, so the financial stress of finding/making meaningful gifts for dozens of people (on very limited funds) is no longer an issue.

But Graham asked for decorations this year. And Bess asked for decorations this year. “Mama, where da Chwismas Twee for me? I want pwetty twee pwease.” This was going to cost me nothing but time and energy. So I emptied all the containers out of the closet.

Bam. The first container was all Bob. My carved nativity. All our carved ornaments. I just stood there and sobbed.

I put up some garland. Put up the nativity from Dave’s grandparents. Put up Bob’s ornaments. And decided I was done. We would just keep Adelaide’s tree in the kitchen and call it a year.

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***I promise there is garland in this photo. Our living room at any given moment. Just keepin it real, folks…***

But Bess asked again for a tree. Asked for ‘red Chwismas balls’ on the tree. We didn’t have room for two trees in the kitchen, since our family tree couldn’t take its rightful place on the buffet this year. Bess can reach the buffet by getting on Adelaide’s therapy trampoline. So I started changing out Adelaide’s tree. Bess ate a snack in her highchair while we did it. Clapping and cheering for the ornaments. Then, she fell asleep. And Adelaide fell asleep. And Graham was working outside with Dave.

It was just me and that blasted tree. Crooked. Held up by dried Great Northern beans in a vase I stole from our bedroom. Garland made from old jewelry and quilting thread. Funky homemade ornaments from Graham. Dave’s first Christmas. All our kids’ first Christmases. None of mine survived a Colorado flood that filled our crawl space and destroyed most of my childhood things. But Adelaide’s ornaments help fill it out. Polar bears. Butterflies. Buttons. And now Breakfast at Tiffany’s. And every ornament carries a story of our family.

But I am that tree this year. Not grandiose in any way, wobbly, mismatched, and barely making an appearance this year. Only doing the Christmas-y stuff, because 2/3 of my children are cheering for red and green to throw up all over our house and my only, and favorite, boy believes that it will only snow on Christmas if we have our decorations out.

We have a tree, garland, some nativities, and the most gaudy Truth In The Tinsel crafts you have ever seen. I filled the stuffed animal basket with Christmas toys. I swapped out the bottom shelf books, putting colors and abcs away while we read and reread about Baby Jesus and the gingerbread man and snowmen. On 70 degree days. This December has been drunk.  

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I put half our decorations back into the closet. I looked around and exhaled pretty slowly. I did it. Before I had kids, I spent days decorating every surface of our house for Christmas. Nativities everywhere. Since Adelaide, things have changed. Because things are always changing.

“Awesome! Pwetty! RED! Chwismas pwetties for me? YAY!” Elizabeth was wowed with my most lackluster performance in 32 years.

She talks to the tree while she’s in her highchair. Stretches out her arms as far as she can, “I got you, pwetty twee. I got you.” And it reminds me that our whole family is that tree. Modest, standing,  eclectic, and making an appearance this year. And that’s good enough for 2015.

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Oh, and I got my first “I love you” from Bess. “I love you, Mama, and red Chwismas balls!” She had her tiny arms wrapped around me, patting my back. That sweet, fiery princess. Who babynapped our Savior. By way of creative trampoline positioning…

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Five Minute Friday | Season

Ready, set, go…

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Photos courtesy of Myra Wike Photography

I try to be really honest here. So I’m going to share something tough with you.

Adelaide’s birthday is hard for me. Not just because it falls in December. But because it brings up fears, questions, and this gnawing sadness that another year has passed us by. Sure, I’m happy that we get to celebrate her. But my daughter turns 4 this weekend and my mind is reeling with how little we gained and how much farther behind we are with every day crossed off a calendar. It’s not logical. Rationale says, “It is what it is. She’s making progress. Rejoice.” My mom heart counters with, “I need to clean the highchair for food time. I need to let everyone know she outgrew size 5 diapers and needs size 6. Does she even care that we’re having a party? Cancel.” Every year, I want to cancel and spend my own child’s special day hiding under covers. But I keep going. And this year has actually been the worst. I almost cancelled our family brunch 12 times. And even know, I’m thinking of canceling. I didn’t finish decorating. I have no food. I’m buying her Wal-Mart cinnamon rolls for her cake. This party is going to be a direct reflection of my broken spirit. It’s not what I had intended. I spent hours pinning things to her birthday board. I had grand vision for this birthday. This time to honor one of my favorite people. To start a new year. And maybe that’s why it’s been so incredibly difficult. We are starting a year that will be full of difficulty and changes, and I wasn’t expecting 2016 to usher in such a hard season. It was sprung on me. Unlike Adelaide’s birthday, which I’ve been planning since last Christmas. But plans can only take you so far when your soul won’t follow through. And this special needs mom is between happiness of surviving another year and feeling downtrodden for surviving another year, but falling so incredibly short. And trying to figure out which drool bib will look cute with a birthday dress sucked the wind right out of the Pinterest sails. Adelaide’s Breakfast at Tiffany’s party became a breakfast. Just like that.

Time’s up.

Join me at http://www.katemotaung.com with your own five minutes of raw, unedited, and probably-shouldn’t-be-sharing thoughts. It’s cathartic, at least.

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