“Adelaide, where is Baby? Where is Baby Lewis?”
She crawled over and grabbed his ten-week-old feet.
“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.
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!
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.
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.
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.
Tomorrow, we travel more than 7 hours for Adelaide’s pediatric neurology appointment. Some days, I forget all of Adelaide’s limitations and unknowns. Other days, it is thrown in my face at every turn. As I was sitting in our living room nursing our ‘typically developing’ Bess, my heart was just hurting. Bess is meeting new milestones every day. Today, she put her feet in her mouth. She and her big sister share socks.
Adelaide has the feet of a 6-month-old. And the height of a 12-month-old. And the head of a two-year-old. And the brain of no one else. We have yet to find anyone with her same brain structure and abnormalities. We have spoken with thousands of parents in a dozen countries. And I was wrestling with that fact, while still trying to embrace the truth: no one is perfect. We live in a fallen world. Not one person has a perfect brain. Or perfect feet. Or a perfect mom. It’s okay to be a mom who hurts and grieves and wonders and hopes and rejoices. And who experiences those things all in the same day. Or the same hour.
And I watched this six times and bawled.
I would love to see a mannequin of Adelaide. It would be a beautiful moment to see her stand.
She’s finally here.
Our newest addition
Adelaide, meet your new Baby Sister.
Uncle Hosea & Taylor
Bess & Daddy
Uncle Greg & Aunt Leslie
Daddy & Bess Snuggle Time
Adelaide & Elizabeth