Category Archives: Adelaide {on a noble journey}

Wash Feet

I was giving Adelaide a bath, when she grabbed the washcloth from me. I assumed she was going to chew on it. She mouthes everything, especially cloth items. 

But she surprised me and ran it over her legs. Then she plunged it into the water, brought it up, and rubbed it over her legs again. One at a time. 

My eyes brimmed with tears, watching my girl scrub her own legs.

And then the tears actually fell as she put the washcloth on her feet and said, 


And she scrubbed her own feet for about 15 seconds, before trying to put the washcloth in her mouth. 

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Unfinished Projects | Raw Thoughts On Milestones

Two years ago today, I found an embroidery hoop, some fabric from a scrap bag I bought at Silver Dollar City, and an old baby shirt. And I turned it into wall art. 

Which I never ended up putting on the wall. It’s still behind the girls’ rocking chair. With four other things I meant to hang on that wall. I just never finished the project. I was waiting on a friend to make a canvas for me. And then life kept happening. 

Two years have rushed by. In those years, Bess and Graham have reached all their milestones plus some. Adelaide has not. 

When Adelaide was a baby and not reaching milestones, they sent us off to get an MRI. I remember begging God for hours, “Please let her sit up so we can cancel this MRI. Or make her MRI normal.” Neither happened. 

Adelaide didn’t sit until she was much older. And her MRIs showed a brain that was severely malformed. Six malformations. One of them, colpocephaly, is pretty rare. There are about 150 people in our online support group. 

Her second MRI came during a trip to Kansas City. Our second neurologist. And we heard ‘polymicrogyria’ for the first time. I eventually joined an online support group. It was reassuring to find other families with these long words typed into longer reports. Our rare kids reaching milestones at different times, so we can rejoice together over the most mundane things. 

Bob bought the shirt for Adelaide a few months before the trip. Said the girl on the shirt had a big head like Addie, and they were both adorable. We were checking on Adelaide’s mega cisterna magna, so the shirt seemed like a perfect match. 

I don’t keep lots of things. Our house is small, and I tend to fill it with things we need in the moment. And books. Books got me through my abuse-filled childhood. But I kept this shirt, and I turned it into something else. Something I was proud of. 

Two years later, it’s still not on the wall. But that’s the beauty of it. In its own time, it will get there. Along with a few other things. It represents Adelaide’s journey…she operates on her own timeline. Meets milestones when it suits her. She stood up on her last day of preschool. They worked on that skill for almost 2 years. And she pulled it out of her hat on the last day. It’s so Adelaide. 

And it was so Bob to buy that shirt for Adelaide. Until he could no longer talk, Bob asked about his Adelaide. He fiercely loved all his grandchildren, peppered across the United States. He had special nicknames for each one. Inside jokes. He called them, video messaged them, and bought them weird/overpriced/silly gifts. He talked about his grandkids to everyone. He was a proud Papa. Very proud. And he was proud of every milestone Adelaide achieved. And if she didn’t achieve something: “Who cares? Addie can do whatever the hell she wants!” He had a soft spot for her. 

And it’s so me to have so many unfinished projects. It’s been 4+ years, and I still haven’t finished the girls’ room. Now we’re trying to build a special bed for Adelaide, and wall art seems less important. But I’ll still put it up at some point. I’m taking my time. And looking forward to Dave completing their bookshelves, so I can fill them with books Adelaide may never be able to read. Or maybe she will. You never know with her. She’s never seen those MRIs, so she doesn’t realize she’s done more than they said she’d  ever do. 

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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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I Think I Checked The Wrong Box | Raw Thoughts About Intellectual Disability 

“Do you want to teach kids with Learning Disabilities or Mental Retardation?” I was an 18-year-old at Freshman Orientation. I had just added a Special Education emphasis to my Elementary Education coursework. It would add close to 25 extra hours, but I knew I wanted to become a Special Education teacher. I just had no idea which kind. I hadn’t thought that much about it. I had lots of experience with learning disabilities. But I had some experience with complex medical needs and mental retardation. I looked at the boxes and just checked one. It took 15 seconds. 

At Adelaide’s IEP meeting in the Fall, I asked for additional testing. Dave and I wanted to ensure that Adelaide ended up in the right placement for kindergarten in 2017. I’ve had lots of experience with IEP meetings, evaluations, and progress reports. It’s different when it’s your own child. Everything feels slightly fuzzy. I wanted some hard numbers on Adelaide, not just how I feel things go at home. It’s difficult to assess a nonverbal child, but I signed off on the district doing what it could. 

I filled out some different assessments at home. Ones I had only done as a teacher. Checking the parent box this time around. I cried. Even without knowing the percentiles, I knew the raw scores were already low. 

I sat at the meeting and got my first glimpse of Adelaide’s results. I knew what each subscore meant. I knew what the language meant. I knew that I had been right. Adelaide needed a completely self-contained kindergarten class. It wasn’t just a hunch. It was fact. I saw Intellectually Disabled and knew it was basically the new term for Mental Retardation. The box I didn’t check in college. 

Back before 9/11 or meeting her husband or being old enough to drink, a childless teenager checked the Learning Disabilities box. Altering my 4 1/2 years of college. And I don’t know if I checked the right box. 

I’m the mother of a child who scored lower than any student I ever worked with. I’m inexperienced in all of this. Everything I did with Intellectually Disabled children was volunteer work as an assistant. 

The person delivering the new testing information almost whispered the words Intellectually Disabled. I think we all hoped there was a mistake somewhere. But the truth was there. Adelaide uses very few words and signs meaningfully. She drinks from a bottle. She loves BabyFirst TV and other toddler shows. She doesn’t play with toys, but chews on them. She doesn’t enjoy big kid books. 

I was sitting there, feeding her Cheerios, realizing that this could be it. The neuro team mentioned plateauing. “One day, Adelaide will start to level out.” She has already done so much more than her MRIs would suggest she’s capable of, but maybe we’re starting to see Adelaide doing her best. 

Or she could surprise everyone and use a communication device to tell us paragraphs. She could learn to read. We have no idea.

But, at least for now, we’re working on adaptive skills. Learning to use a cup or straw. Possibly potty-training on a schedule. Completing two piece puzzles. Stacking blocks. Identifying colors and objects. 

I loved teaching the classes I did for those five years before birthing Graham, but I sometimes lie awake at night thinking about that one box. How I could help Adelaide now if I had a background in her disability. Why didn’t I choose Mental Retardation? Or why didn’t I add the 12 hours of night school to get my Speech training? My advisor practically begged me to do it, but my scholarships wouldn’t cover it and I was working 40 hours a week. How would I keep my job? I should’ve made it work.

I use what I learned in my elementary education classes to teach Graham, but maybe I should’ve studied something else. Physical therapy or occupational therapy or a hundred other things that would help me help my own daughter. Or maybe even something that I could do now from home to make money. Accounting, editing, copywriting, and on and on and on. Being a single income family has its difficulties. I literally bring no money to our family finances. Because I have no marketable skills. 

I obviously can’t change anything about my Bachelor’s degree. And I can’t change Adelaide’s brain. The scores don’t change Adelaide’s worth at all. They are just numbers. And I have a transcript full of classes I never use. May never use again. We’ve always known it was unlikely Adelaide would live on her own. She’s our lifelong roommate. We’re slowly preparing for that reality.

Dave says I ramble. I think it helps me process everything. These thoughts and tears are just mine to deal with…not even sure why I’m typing them here. They are part of my special needs mom journey. I just wish I would’ve prepared better for all of this. Since I can’t, I eat some ice cream and binge watch Megan Follows and Jonathan Crombie as Anne and Gil and then cry in the shower. 

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And Then She Was Five

Adelaide turned five. She was supposed to have a Jelly Bean birthday party over the weekend. I made a banner and table decorations, had everything ready for cupcakes, and plans to make my mom’s famous Broccoli Cheese Potato Soup. We had supplies and gifts and ornaments and outfits ready to go. It was the first birthday party I haven’t wanted to cancel. 

I sound like a monster, but Adelaide’s birthday is a difficult time for me. In years past, the highchair prep and suggested gift list and lack of friends made it so hard to get excited. So I talked to Dave about canceling, and he supported it. Then I changed my mind, and he supported it. And we did that a few (dozen) times every year. But then we had her family party and loved it. 

This year, I was ready! Emotionally and physically. Dave teased that I jinxed it. 

Since I had the party plan and the heart behind it, our kids ended up with fevers and vomiting. At 4 am, on a Friday, I knew we had to cancel. It was so disappointing. Her 5th birthday. Cancelled. 

On her actual birthday, she was still sick. No school. No cute clothes. No fun anything. She took two naps and wore her boy pajamas from a yard sale. All her cute girly pajamas were dirty. Because I was, and still am, horribly behind on laundry. That’s what happens when you end up with 3 loads of vomit laundry on the first day of a stomach bug. 

My mom dropped off balloons and a miniature cake for her birthday girl. We put Adelaide in some real clothes and sang Happy Birthday. We took a few minutes to celebrate our first daughter. The one with the unknown life expectancy. The one with a combination of abnormalities her geneticists haven’t seen in anyone else. Our rare snowflake. The one who brings us joy every single day. 

We let her eat a few bites, then put it away. Stomach bugs and birthday cake don’t mix. But we couldn’t let the day go by without her knowing just how much she means to us. And she’s been begging for cake since she saw Christmas lights go up in November. She knows that Christmas means birthday.

We won’t get to reschedule. December is such a busy month and we already had only half the invitees coming that day. But we’re going to take Jelly Bean cupcakes and a banner to our family Christmas celebrations. And she’ll wear her special outfit and eat cake and clap when we sing. Our beautiful December Baby is getting her day…and I don’t think Jesus will mind one bit that He’s sharing his with Miss Adelaide. 

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Walking Hand In Hand

I opened the van door and Adelaide shouted, “WALK! READY!” I removed her from the car seat and assumed our normal position: me in front, walking backwards, holding onto both of her hands. “NO!” She wouldn’t hold my hands, she kept letting go of one. She wanted me next to her. 

We had tried it earlier in November. She had taken a few steps, crunching the leaves, and then collapsed. I could tell she just wasn’t ready for it, but she had laughed all the way through our trial run.

But on the last Tuesday in November, she was ready to walk hand in hand. Twelve blissful steps. 

Just days before her 5th birthday, Adelaide and I walked the way I had imagined we would at her 1-year-old birthday photo session. I waited 4 years for those precious seconds with my girl. It was a dream come true. 

She collapsed onto the ground, giggling all the way down. 

But she didn’t stay there for long. “WALK! WALK!” I carried her back to the van, got behind her, planted her feet on the sidewalk, and placed my hands under her armpits. I could tell she was exhausted, but wanted to walk into the house. 

She took more than 100 supported steps, then walked up our porch’s three stairs. She kept going, as we walked over the threshold. She shouted, “WALK! WALK!” as we made our way to the carpet. Then she collapsed onto the carpet laughing and clapping. So proud of herself. 

Still not sure how these years have simultaneously felt like one fleeting hour and an eon. It’s the paradox of parenting. 

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I was trying to gather a few photos for Adelaide’s upcoming 5th birthday post, and this happened…

Happy Almost Birthday to our Adelaide! 

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I’ll Be The Waiter!

Me: “Daddy says we’re going to a restaurant! Let’s get our shoes on and be ready when he gets here!” 

Graham: “Yay! Were pretending restaurant tonight! Let’s get fings ready in da kitchen! I love when we do restaurant!”

Me: “We’re going to a real restaurant tonight! Let’s get our shoes on!” 

Bess: “I be the chef! I help Daddy make food! I love pretend restaurant!” 

Me: “I know we pretend restaurant a lot, but tonight Daddy is taking us to Cheddars! We are eating at a real restaurant tonight! Let’s get our shoes on. He’s almost home!”

Graham: “I’ll be the waiter! I love being the waiter! Let’s go get the restaurant ready before Daddy gets home!”

Me: “Does anyone understand that we need shoes? Daddy is taking us in the van to Cheddars! Please put on your shoes!”

Bess: “I make menus! You pick pizza?”

Me: “I give up. Adelaide, are you ready to go to a restaurant?”

Adelaide: [crawling to the door] “EAT! GO! EAT! READY!” 

Me: “One down. Two to go!” 

We had such a fun time! It’s our new October 31st tradition. The restaurant was pretty empty. Our service was amazing! Paxton, a lovely young lady, was so attentive and conscientious of Adelaide’s needs. She even brought treat bags to the kids. Tiny candy for Adelaide, allergen-free candy for Bess, and ‘big boy’ candy for Graham. 

Cheddars is one of our go-to restaurants when we do eat out, because Bess has no issues with their food, Adelaide has plenty of room, and Graham’s extremely loud ‘inside voice’ phases no one in a place so loud. 

What a fun new tradition! Even though we absolutely love our pretend restaurant nights. Our little people are simply the best. 

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Adelaide’s First Stairs 

Yesterday, Adelaide decided she would walk all the way to the house. She took 89 reciprocal steps, including a turn, and went up our three stairs. I was there supporting her torso, but the leg strength and balance were all hers. She even problem-solved when her foot got stuck…moving it slightly back and then moving it forward. At the stairs, I just waited to see what she would do. When she lifted her left foot onto the stair, shifted her weight, and pulled her right foot up, I cried. The happiest mom tears. She took the last two stairs, leading with her left, and then collapsed onto the porch. All smiles. 

Today, it’s raining. I planned on carrying Adelaide into the house. But she had other plans. “I…..WALK…..RAIN!” So I gave my phone to my favorite boy, and we snapped some photos of Miss Adelaide walking. 

What a beautiful October surprise! 

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