“Adelaide, where is Baby? Where is Baby Lewis?”
She crawled over and grabbed his ten-week-old feet.
“Dave, I can’t find it! And now we owe a late fee!”
“Can’t find what?”
“The water and electric envelope!”
“Just pay without the bill. They’ll take it at the drive-thru.”
“No, Dave! I lost the money! $200! I took your paycheck and used that stupid Dave Ramsey envelope thing! Now I’ve lost $200 and we’re late.”
Dave chuckled at me in the way I once saw him laugh at an environmentalist who chided us for using styrofoam cups.
We ended up overdrawing our account, because I couldn’t find the envelope anywhere. I searched our entire house.
Fast forward a few days.
“Where is that wretched envelope?” We were at Walmart. I couldn’t find our envelope to buy hygiene items. I thought Dave was going to divorce me. Right in the checkout, where celebrities (who divorced for less than losing an entire paycheck divvied up into envelopes) donned magazines we couldn’t even buy with our lack of cash. All we had was the change in Dave’s pocket. We had to use our emergency credit card to buy toothpaste.
We found a smattering of envelopes almost three months later. I had put them in a different purse. No idea why I’d split them up, but I found several hundred dollars in a purse I rarely used. One envelope said “Car maintenance” and we had already changed our oil.
We learned that month that we are debit card people. On payday, I tithe and then pay all our bills a few weeks early. Then we figure out how to use the rest. It’s not a life-changing system, but it’s worked for years now.
I spent decades trying to copy things that I thought I was supposed to be doing. My first year teaching was all about copying my mentor. My second year, I copied a female co-teacher. By my third year, I started to do things my way and it worked. It wasn’t without flaws, but it was me.
When I became a parent, I tried to copy other moms. Celebrities. Strangers in online forums. I did what I thought I was supposed to do to the point of crying out, “I hate bathing this baby!”
Graham loathed baths. Partly due to his personality of being contrary, but mostly because babies sense when you are stressed about something and they cry. Their lives are confusing, and they take their cues from us. The cues I was giving off were ones of lavender-infused sleep-deprived insanity.
My mom walked up to the bathtub. “Why are you giving him a bath? He’s not dirty. He didn’t have a poop blowout. Have you been trying to bathe him everyday?” I was in tears. Graham was screaming. “Yes. I read that he’s supposed to get a bath to help him relax. He needs a routine to sleep better.” She chuckled at me in the way I once saw her laugh at an environmentalist who chided us for using styrofoam cups. Different guy. Strange, I know. “Lyndse, that’s obviously not working for ya.” My mom scooped Graham out of the bath, dried him off, put on his diaper, and told me to nurse him.
“Lyndse, you’ve gotta stop trying to do everything ‘they’ say to do. The books and your friends and people online. Just stop. Being a mom is hard enough without adding all the things they throw at you. Don’t even listen to all the stuff I say! I’m sure I gave you too much advice, too! He doesn’t need a bath everyday. Unless you both like it. Then give him a bath everyday.”
The classroom management plans. The daily baths. The envelopes I couldn’t keep track of. It was all stuff I was trying to copy.
I’ve gotten better over the last few years, but this blog is proof that I was still trying to copy and listen to all the people ever. Failed challenges. Failed sponsorships. Failed writing schedules. Failed book reviews. Book reviews are supposed to be easy to implement. It’s your opinion about a book you read. I couldn’t do it. It just wasn’t me. It wasn’t working for me to review random free books they sent to my mailbox and inbox.
I’m 34 now. And it’s getting easier to say no to all the voices of friends and strangers. To stop jumping on bandwagons. To realize that even great things that don’t work for your family aren’t great. They’re just getting in the way. We can’t implement everything we see and hear.
There are other things that I would love to work into our schedule and budget, but it’s just not the right time. Maybe someday I’ll be wearing lipstick that doesn’t rub off when you eat. Not sure. Can’t afford it right now. Our homeschool routine is all us. It’s a mix that fits our family personality really well. Maybe we’ll attend a co-op someday. Who knows? It doesn’t fit us right now. I will never go back to daily baths. Nope. Never. Non-negotiable. Maybe those cash envelopes would work if we tried them again. No idea. Dave banned them for life. Can you blame him? They work well for thousands of people. But that doesn’t mean we need to use them.
Off to put away laundry. Still haven’t found a system that works. And I’ve copied every single one out there. But we all have clean, albeit wrinkled, clothes. So we’re winning in my book.
Heck, sometimes our clothes even coordinate. But not very often. Which breaks another Mom Expectation I used to copy…
“Is she a real person?” Dave’s question a few different times. I’m obviously not going to fall for message requests from the widowed-hot-navy-seal-with-a-dog who is actually a scammer. But my husband wanted to be sure his wife wasn’t being tricked by a fellow-disability-writer-who-loves-literature-and-Taco-Bell charlatan. I reassured him that she was real. I was 98% sure she was a real person. And I was 100% sure we were going to end up great friends. That was more than two years ago.
We started with Facebook messages, but quickly moved to text messages. I don’t remember why. Then she started sending gifts to my kids. And I started giving feedback on her upcoming book. Her husband texted me, with her permission, when she was hospitalized. He read my texts aloud to her. My husband prayed for her every time she was hospitalized.
It’s not a typical friendship in the “Let’s get coffee and split this overpriced muffin” kind of way. It’s more of a “Em, Adelaide needs to poop within the next hour before we leave on this trip and I’m trying to find a place on the interstate to change her diaper” friendship. Emily knows the only answer is a combination of 5 memes and gifs. It’s the “Lyndse, I just bought more yarn.” kind of relationship. Seems innocent enough on the surface. But I know the implications of my spoonie buying yarn.
It’s not a typical friendship.
But who wants typical when you can have what we have?
And I’m still not sure if Em called me a HERO or a NERD….that conversation could’ve gone either way.
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.
“Of course he did. Of course Gil f***ing died.” I mumbled it under my breath. In the front seat of our van. We were driving home from Iowa. From Bob’s funeral. I opened up my phone to see that Jonathan Crombie had passed away.
He was Gilbert Blythe. On VHS. Several places were warped. I didn’t own a copy. They were always from libraries. Too many libraries to count, because we moved so much.
When we moved into a new house, I would unpack all my books. Before my clothes. Most of my belongings stayed in cardboard boxes, ready for the next move. But my books were always freed and put on the white shelf. Not even a real bookshelf. It was one of those veneer over pressed board shelves that bubbled up when I accidentally left a glass of iced sun tea to sweat on it. It was wobbly. But it held my books. And I always unpacked Anne and Gil first. Their covers completely falling off.
I’d read them dozens of times before I even saw the movie for the first time. But once I saw it, Megan and Jonathan were now the faces. And they were perfection. As I read and reread the entire series from Green Gables to Ingleside, I couldn’t shake them. And their voices recited the lines. Jonathan’s Canadian accent replaced the voice I had created in my imagination.
I hated saying goodbyes. You trade addresses with a kid you know you can never write to, because you have no stamps. You make promises to see one another again someday. My friends would send one card, with a new school photo. I had no photos to send back. We always bought the cheapest package and my photos went to family members I saw twice a year. But I did this ritual over and over again. Crappy rental after crappy rental. Nodding that I would write, and hoping maybe we could afford stamps this time around. But we never could.
I didn’t need money to read my books. I didn’t need money to ride my bike to the library. I didn’t need money to daydream about Prince Edward Island or how amazing it would be to have a “dad” like Matthew Cuthbert and get a scholarship to college and marry a man like Gilbert.
And as a 32-year-old me traveled home on a long stretch of highway with a grieving 5-year-old who actually had me photograph him with the coffin so he could always remember how weird the embalming fluid made his Papa’s hands look, I grieved losing the person who was the closest I had to a dad. Bob was finally dead. The road to being destroyed by cancer had been simultaneously fast and drawn out. But he was my Matthew. Taking me in and making me his own, even though he already had children. And I cried over Jonathan’s death. A brain hemorrhage. His family didn’t even get to say goodbye. They had waited 3 days to announce his death.
It’s probably why I never want to leave this place. This house we’ve been working on for 11 years. Because it’s the longest I’ve ever lived anywhere in my entire life. We came home to this place after our honeymoon. We brought all four of our newborns here. We came back to this place after leaving two of our children with hospital pathologists. We were here when Bob lived. We were here when Bob died. Dave surprised me with my own copies of the movies, which have been the centerpiece of many date nights in this house. And my tattered, yellowed books are on a real wooden shelf in this house. A shelf bolted to a wall we own.
Two years later, I miss Bob nearly every day. I think about how he teased me for having so many books that Dave had to keep building new shelves. And he would’ve teased me for crying over Jonathan’s death. And he would’ve teased me for being so sappy. I miss the teasing so much. That was the worst goodbye of the countless goodbyes in my life. And a stamp can’t fix it.
“How would you describe yourself as a Mom?”
“An incompetent loser.”
That’s what I wanted to answer.
Instead, I said something along the lines of, “I’m a stay-at-home mom. I was in drug-free labor for almost 20 hours before an emergency c-section. I’m a breastfeeding mom. A baby food-making mom. He doesn’t watch TV. We plan on homeschooling him. Probably starting kindergarten early, in one of those co-ops where he’ll learn Latin.”
I know there was more in my rambling answer. Can’t recall all of it right now.
I don’t know what she was actually expecting me to say, but I’m sure my checklist made no sense.
I had learned early on in the Mom Community to define myself by choices. These topics filled magazines, blogs, and Facebook forums. Birth, sleeping, feeding, free time. Everyone had an opinion. And it stressed me out.
I was a new mom, with a fantastic support system, but I thought everyone was doing this mom thing better than I was. Graham was a difficult baby. Sleep eluded us. He was a frequent cluster nurser. He was strong-willed. I spent his first 8 months of life trying to figure out what I had done wrong.
I hadn’t done anything wrong. Except the part where I was trying to control another human with his own desires. I hadn’t yet learned the difference between control and guidance. Breaking versus molding.
In that moment, I tried to define my motherhood by some choices I had made. And decisions we would make years down the road. Trying to fit into a strange box of motherhood.
It’s comical how experience changes you. How other kids change you. I spent a few years talking about homeschooling Graham early. Then we started him at the normal time. We didn’t join a co-op. He knows zero Latin. My kids watch lots of TV. Adelaide goes to public school. My girls ate homemade baby food, those pouch things, and jarred food. I’m about to have my 4th and final c-section.
What would my answer be now?
“I’m a mom of 6 kids, with 4 surviving. I’m learning to enjoy all these different seasons, including the really hard ones. I’m taking this thing one day at a time. Past that, I have no idea.”
And that’s okay.
The day after I remembered my abuse, I went to a police station to give a statement. I knew nothing about the process I was starting. I sat across from strangers. Officers and Detectives I had seen at parades and events around town and on Facebook. But I didn’t know them.
I nursed Bess and asked them if I could close my eyes during the retelling, because I was embarrassed. They were wonderful. And I left feeling a newfound freedom. They had believed me. For a decade as a child and teenager, my father had always told me the police wouldn’t believe me. He was wrong.
During those early months of the investigation in two states, I wasn’t allowed to say much. We didn’t want him to run away before a District Attorney could do her job. So I pretended like nothing had happened. Only a very small group of people knew what was going on. Even know, many details are just not discussed. But I worked tirelessly with two departments to help them get whatever they needed. I completed a timeline where I tried to remember (and give detail) about every instance of abuse in my life. It was hell. But I kept going, because I was determined to do everything in my power to get him imprisoned.
People often ask me why I fought so hard to get him incarcerated. Why I felt the urgency to go public after the trial. Why I didn’t just go to therapy, get over my issues, and move on with my life? Silently.
The answer is pretty simple. I didn’t want him hurting anyone else. I’m not his only victim. And I can’t go back in time to the first time he abused me and make it right. Get him arrested and incarcerated all those years ago. Save all those other people from him. But I can help others now.
By going to the police, his crimes were out in the open. When I sat in that first interview, I had no idea if he would still get prison time after all these years. Statutes of limitations are tricky things. But I knew keeping quiet gave him the power to keep doing what he was doing. And, like most predators, he was getting “better” at it. I knew that I couldn’t sit around when he was most likely grooming and abusing new victims.
Some people, who are no longer part of my life, said I should’ve just let it go. It was so long ago. What did it matter now? I responded that it mattered to me. I was worth it. And it mattered to all the people he wouldn’t get to abuse because I was speaking up. They were worth it.
He stated in a report that he was going to move back to my area after he was done serving his sentence. So when I had been on the fence about how much I was going to share publicly, that was the catalyst for going to the blog. I wanted as many local people as possible to know what he had done. What he was capable of. If he thinks he’s moving back here, that’s fine. But thousands of people know the truth. Tens of thousands of people have read and shared these posts, which will make it harder for him to abuse the next person.
Going public was not just part of my healing process. It was my way of saying, “You aren’t fooling anyone.” Just recently, someone stopped me to say she had appreciated him as a pastor and wanted to know how he was doing. “Well, he’s in prison for being a child molester.” Her face was shocked. “How do you know it’s true?” “Because I was one of the children. And he had multiple affairs, stole all my mom’s money, then tried to kill himself to cover everything up.” Then I walked away. One more person who knew the truth. I want this area saturated with people who know. I want him to be recognized for what he is. Not what he says he is.
Some accused me of being bitter. I’m not bitter. I’m smart. I know that predators are less likely to strike again when they can’t hide behind the facades. Blame it on being the oldest child, but I feel a duty to protect others. And I’m using my tiny corner of the internet to do it. And I’ll keep using it. Because I’m in the minority. Most people who are abused will never tell anyone. Never go to the police. Never go public.
But maybe one person will read my posts and take that first step to say, “I’m worth it. And I can help stop this person from hurting others.” I was victimized long enough. I’m now a survivor. That freedom is worth every moment of hell it took to get here. And it started with a trip to a small police station in the middle of America. Where a scared-out-of-her-mind woman nursed a baby girl, while simultaneously protecting her from the grandfather she will never know.
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.
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!
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.