Tag Archives: special needs parenting

Two In Diapers

I’ve had two kids in diapers for more than 3 1/2 years. But Bess’ diapers, right before she pottytrained in the Spring, weren’t that much smaller than Adelaide’s. 

I can’t help but laugh when I pack the diaper bags for Adelaide and Lewis. It reminds me of Buddy the Elf every time. 


It doesn’t help that Adelaide loves singing, Santa, sugar, and tall socks. 

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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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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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My 2017 Writing Resolutions

1. Write zero blogposts about something horrible a stranger said or did.

Last year was full of people I’d never even met saying I should’ve aborted Adelaide. Strangers telling me “miscarriage stuff” is too uncomfortable for blogs. Messages saying molestation and abuse are private issues that shouldn’t be discussed online. Someone at Walmart pulling her child away from Adelaide, while hissing, “We don’t talk to people like that.” The woman at an amusement park who whispered, all too loudly, to her husband, “I could never do what she does. All that work with no pay-off. What a waste. And why so many kids?”

I used to become infuriated or dejected from these things. I thought writing about it would help me process. Assist me in being a voice for the voiceless. Or at least give me a chance to stand up for myself, because I was never brave enough to do it in the moment. 

Recently, I realized penning my thoughts and feelings about it was stealing my time. And energy. Both are running fairly low right now, so it seems unwise to continue down that path. 

So you won’t see any posts that start with “Some person I have absolutely no relationship with was a complete jackass today. Here’s what happened…”

2. Write zero blogposts about my shrinking community.

WordPress and Facebook like to notify me when things are at an all-time low. I already shared my thoughts about it, but I wanted to make it official. 

You won’t see any posts where I lament that I have fewer reads than any other time in my 4+ years of blogging. That my engagement shrinks everyday. Because I’ve moved past it. 

I’m glad you’re here. And I wish we could just meet for coffee and over-priced cookies and chat over one another non-stop. I actually like our tiny group. Maybe I will do a real life meet-up someday, where we can get together and be odd. 

3. Write zero blogposts about poop. 

Just kidding. I’m a Special Needs Mom. My life revolves around poop. 

When I was a little girl, I never imagined that I would be out to dinner with my husband for one of our two dates in 2016, and he would ask, “Did Adelaide have a good poop today?” And I would answer, “Yes! But I hope she poops again for my mom.” And Dave would tease, “Sorry, Della, but you offered to babysit. Enjoy the diaper!” And we would both laugh. In a restaurant. 

Here’s to 2017! A year where I give zero spotlight to haters and statisticians, but more time to bowel movements! 

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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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Goodbye, Laundry Chair

Laundry Chair is no more.
It’s still there, but it hasn’t really been used for clean clothes in weeks, possibly months.
Did I finally develop better systems? Better time management? A greater sense of pride in my home? More self-discipline?
Nope. 
One day, Adelaide started grabbing all the clean laundry out and chewing it all up. Then she did that all day, everyday, until I had the chair all emptied of laundry. I would give it a few days and try again. Tossing a few loads onto the familiar cushion. Immediately, Adelaide would go over to destroy our fresh laundry. 
That’s her chair. She circles it dozens of times a day. She often tries to stand at that chair. And if there’s anything in it, she eats that thing. Her arms are now long enough to reach the very back. And she will reach, rake, and go straight to her mouth with whatever was occupying the space. 
I’ve read books and articles and blogs about laundry and housewifery and time. Turns out all I needed was to lose a cute pair of Elizabeth Mae’s leggings to her neurodisabled sister’s jaws. Just like that, I started folding each load as it came out of the dryer. And I realized that I could fold and put away a load of laundry in minutes. 
Of course, we’re in a new season. Graham and Bess do chores. Graham helps fold and put away laundry. Bess helps Godzilla all the piles and reminds me why chores are difficult with a 2-almost-3-year-old. But we all pretend she’s helping. It’s still better than losing the clothes to Adelaide’s mouth. Where they must be retrieved and rewashed. 
“Mama, you never put laundwy in Laundwy Chair anymore. What we gonna call it now?” 
“Wicker Chair? That’s what Daddy and I called it before you named it Laundry Chair.” 
“Wicker Chair!”
Dave bought it for my birthday before we were married. Stored it at his parents’ house before we were man & wife, sharing a home. A wicker chair that we thought would be for snuggling and reading and whispering little love nothings. And it did. And it also held laundry for a season. A season when we were navigating a new normal. A season where 14 loads of clean laundry would pile up before a marathon folding session. 
Honestly, I could easily still be in that season. But a 4-year-old did what no one else could do. She required me to rethink my lack of systems. She caused me to problem-solve. She put me on a crusade to Save Our Socks. The days of piling clean laundry were over.
Laundry Chair went back to being just plain, old Wicker Chair. But it’s really Adelaide’s Chair. A name we will never use, since it would cause an immediate territory war amongst the Ballew kids. I keep that chair empty now for my own sanity…but mostly because I enjoy watching Adelaide use it to grow stronger. And that makes all the folding worth it.

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Can We Actually Talk About Insurance?

When I was a kid, insurance was just a word in a math problem. And the word problem was always something ridiculously unrealistic: 

If Suzy breaks her arm and the doctor charges her $75, and her insurance only covers 80%, how much should Suzy send to the doctor’s office from her checking account? Show your work.

Sorry, Suzy, but if you are getting out of this with a $15 charge, you are most likely a time traveler or sleeping with the doctor. The actual medical doctor, because that other Doctor is too busy with wibbly-wobbly timey-wimey business. Please don’t show your work…

As a grownup, insurance is part of my daily life. And sometimes a curse word. Because I have a disabled child. 

A common misconception is that all children with special needs are on disability or Medicaid or both. We get lots of people making assumptions about our family and our financial choices. 

Adelaide happens to be on neither. That’s our choice. I honestly am not concerned with the choices other families make. Each child and situation are unique. But it is absurd to think that a wheelchair = fill-in-the-blank services.

For several years, Adelaide was on private insurance. Some stuff was covered, most wasn’t. That’s what happens when premiums need to stay in a certain place for all the members. 

But this year, things are different. 

Dave took a new job. We love it! It’s an awesome company. The owners are wonderful. Dave uses all his skills everyday. He has a fantastic team. It’s a small company. But the insurance premiums are higher. So we had to get creative. 

We looked at all our options. We even checked out the “marketplace” and it was half our take-home pay for the year. After I laughed, peed my pants, and laughed some more, we looked into a medical sharing group. 

We were able to get a plan that fit our budget. We chose our ratio of premiums to out-of-pocket costs. Everything was looking great. Then, we got pregnant completely unexpectedly. We learned that the pregnancy and birth wouldn’t be covered, due to an issue with the start date. It was back to the Excel spreadsheet to figure out how we were going to insure our now growing family. 

Then we lost Laurence and Flannery. We were forced to sell our souls to the devil to afford COBRA. It was a nightmare. But since I was back to being unpregnant, we went back to the medical sharing group. 

It’s not perfect. Adelaide’s pre-existing conditions aren’t covered until March 2019. Three years from the start date. Eeek. It’s the price we pay to afford our premiums. But under the private insurance, she didn’t qualify for therapy or gear anyway. We were already paying out-of-pocket for all gear and using public school therapy services at our local preschool. 
So what will we be doing for all her other appointments and procedures? Haggling. Adelaide has two appointments at our Children’s Hospital next month. So I need to put my game face on. Aside from a brief season as the worst player in my homeschool soccer league, Athletic Lyndse has never existed. So I need to actually acquire a game face. But that unibrow was on point!

  
Why share all of this? Because I’m tired of folks assuming things about our kiddos. We don’t assume that every single mom is on food stamps or every pregnant woman is on WIC or that every military veteran goes to the VA. Why do we assume that every kid with a label and a slew of specialists is drawing benefits? Sometimes our kids are on private insurance. Sometimes our kids are in a medical sharing group. And we all choose what fits our families’ needs and philosophies. 

I had to leave a disability support group on Facebook after being bullied for not having Adelaide on disability or Medicaid. A new mom asked a question and I answered it truthfully. This mom, brand new to our world of disability, asked if it was possible to raise a disabled child on one income without seeking benefits. I answered yes.  I started receiving messages from moms and admin saying I was too prideful and making other moms feel bad. Just because I spoke about our experience and mentioned that we didn’t utilize those services. And I was told that all children with a diagnosis should be receiving government benefits or the parents were neglectful and abusive. We obviously differed in our definitions of neglect and abuse and I left the group. But it’s always stayed with me that an honest conversation couldn’t take place that day. 

So we’ll just do it here. That’s the fun part about blogging. I can write what I want and can’t be censored. Even when I use the worst curse word around: insurance.

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On Hating Other Moms

“Mama, do you ever hate ovver moms? Ones dat got easier kids dan Adelaide? What about da ladies whose babies didn’t die? Do we stop liking dem? It feels wong to do dat.”

My favorite boy overflows with tough queries.

I take a deep breath. Another. And a third.

We discuss how much I enjoy seeing other kids do well. How I could never be upset with other moms who love their kids and take care of them. How, even though I love Adelaide so very much, my dream would be zero disabilities in the world. How Adelaide will be healed someday and it will be fantastic. And how I am overjoyed when other moms get to keep their babies. I explain that we can’t be upset that other people are happy, just because we are sad. It’s not anyone’s fault that our babies died, and God would want us to celebrate other babies. And, finally, how he is right. Being upset with other mommies who get to have their babies is not showing God’s love.

My answers came so quickly and easily. But his question found its way back to me while I was loading the dishwasher.

Am I that mom? The one who loses herself in bitterness? Or am I practicing what I preach to a kindergartner over chocolate milk? It only takes a few careless words to cross over from acceptable grief to alienating those around you.

Graham knows it’s out there. Women who hate other women. Who treat fellow women with contempt, just because there is inequity in the world.

I see it in the special needs community everyday. I left an online group, because women were shunning family members with typically developing children. Refusing to congratulate others on milestones not yet reached by their own kids. Tearing others down for having ‘easier’ lives…their words, not mine.

You see it in pregnancy and birth communities. Like a plague. Infertility, miscarriage, infant loss. Women turn on one another. Hatred and bitterness over something that cannot be controlled. Envy and covetousness rotting bones and friendships. Women acting like small children, belittling the fortunate ones. Acting like the struggles of the womb are an excuse to turn on our sisters. Loathing her for her easy conception or healthy pregnancy or chubby-faced miniature version of herself.

I struggle with my lot as a special needs mom. And I am deeply grieving over Laurence and Flannery. I’ve prayed everyday not to become the woman who can’t rejoice and mourn according to the Holy Spirit’s guiding. I fear becoming bitter. I’m naturally a sarcastic, cynical person. I worry that I’m closer to bitterness than I should be. About to cross over. Hurting others and becoming what I promised myself I would never become.

I don’t wake up looking for ways to be grateful. I’m nowhere near a Proverbs 31 woman. My morning thoughts look like, “Will Adelaide try to eat poop today? How many times will Graham talk back? Will Bess go an hour without being mean? Will I ever get pregnant with twins again? Will I ever even get pregnant again? How do I explain to Graham that we may never have another baby? Did I pay that medical bill? Should I respond to that crazy message or just ignore it? Why doesn’t anyone read my blog?”

I am basically Pollyanna’s foil.

And there are moments when I think about what my life could’ve been. And I wonder just how much easier that Lyndse would’ve had it today. Twice this week, I had to tackle Wal-Mart on my own with all the kids. I wore Bess, pushed Adelaide in her wheelchair, pulled the cart behind me, and tried to keep Graham from commenting on each person’s cart contents. When a 10 minute trip ended up taking seven times that, I allowed the self-pity in. I wallowed for 38 seconds and pushed it out of my heart. It profits nothing to look around and compare myself to other moms. With their size 4 waists, well-behaved children doing everything textbook perfectly, and carts full of things I can never afford. Whether I keep the untrue “why her and not me?” thoughts in my head or text them or throw them on Facebook, they hurt someone.

Graham is like me. A realist. As he wonders if it gets to me, I suspect it must get to him. Our life isn’t normal. Not one of his friends has a sibling with disabilities. He asks me the questions, because he’s trying to figure out what he thinks. He misses our babies. He thinks everyone else is having babies but us. He thinks everyone else has sisters who don’t need special school.

He is too young to realize most people are struggling with something. They just might not be talking about it.

And I think that’s why we so frequently see all this bitterness. We forget that we aren’t the only ones.

I’m not the only mom of three out-of-the-box kids. I’m not the only mom who delivered dead twins. I’m not the only mom who pushes a wheelchair. Pulls a cart. Tries to keep my son from asking a pregnant woman if her baby will come via c-section or out a ‘mom hole’ or die before it can be born. He tells everyone about our babies. Asks everyone if they have their own loss to share with him. He also needs to know he isn’t the only one.

Graham is unwittingly keeping me from bitterness. Because his out-loud questions remind me just how silly our in-heart thoughts can be. We somehow rationalize hate for someone not dealing with the same struggle. How self-centered it is to focus so much on my own problems, that I don’t realize she is going through her own valley. My natural reactions are the opposite of God’s heart. He tells us to share burdens. Comfort those who are going through what we’re going through. What we’ve already been through. Nowhere in His Word does it say that we get to become heartless women, just because our own hearts are hurting. He calls us to something bigger. And even our 6-year-olds know it.

And I pray mine keeps reminding me. Because I really need it some days.

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The Hypotonia Prop

Adelaide has hypotonia. It was the first word I recognized from our useless first neurologist. He muttered it under his breath, scribbled it on a napkin, said she wasn’t that far behind, and told us we shouldn’t even start therapy until she was at least 15 months old. The man scribbled our visit notes on a napkin. Unreal. And then tried to charge us $491.

But I saw the word hypotonia and clung to it. The nurse anesthetist had said the same word just days before when he told us her MRI would be sedated and she would need a breathing tube. A breathing tube? “Sorry, why does she need a breathing tube?” “Well, because she’s hypotonic, her airway will collapse under the anesthesia. Her muscles can’t handle the weight of her head.” They ended up just holding her head and using a mask, but were ready to insert a tube if she needed it. I memorized that word ‘hypotonic’ and looked it up as soon as we were home.

I was disappointed to learn that I already knew it. Our pediatrician had used layman terms with me: low muscle tone. But when I kept hearing professionals say ‘hypotonia’ I took notice, and did the only thing I could do as we waited for our second neurological opinion. I joined a Facebook group. And I met my first Facebook special needs friend.

Every special needs mom has them. These women who start as profile pictures. But then they start answering your questions on a page. And then they send you private messages. And then you become friends on Facebook. Years go by as you celebrate one another’s milestones and grieve one another’s tough days.

Kelly from New Jersey was my first. Adelaide and Cam both had hypotonia. They both had big brothers. They were both amazing fighters. Kelly and I connected right away and were Facebook friends in just a matter of months. She was there, a private message away, when we got our polymicrogyria diagnosis months later. I found out I was pregnant. Then she found out she was pregnant. We both gave our hypotonic daughters sweet baby sisters. She’s been there through insurance nightmares and genetics dead-ends and encouraging me on the days I want to quit. Quit, what? Everything.

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I took a photo just days before we learned that Adelaide had serious issues. I was trying to prop her up on the couch. Make it seem like she was able to sit. Not actually lying, but being as opaque as humanly possible. Hiding the growing fear that my baby wasn’t just slow to sit. No, she couldn’t roll or hold her head up or stand on my lap. Almost nine months old, and she still had the strength of a small baby. And I propped her up. And took a dozen photos before getting one that looked ‘normal’ enough for Facebook. I wasn’t yet in any groups. I hadn’t met Kelly. I was still in the dark about everything. And I posted a photo that not one person realized was staged. She fell over four times. And I hid it all.

After her diagnosis, I continued to prop her. But everyone knew. I had been blogging for almost a year. Still learning to share my heart on Little House, but at least able to be transparent on Facebook. She fell once and I took only two shots.

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In one year, I had mastered the Hypotonia Prop. This skill you never want, but learn quickly. This ability to feign something for just a moment. But your fellow Hypotonia Moms know it. They know she still can’t sit. They know how to use that couch groove. They know to say “She’ll sit someday. I know it. Cam is always proving doctors wrong.” And that’s why I laugh when people say Facebook is a waste of time. Because it’s often my lifeline. Connecting me to anchors all over the country. Starting with one in New Jersey.

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