Notes From the Road

A few weeks ago I said to my husband, “I wonder what kind of mom I’d be if I weren’t a special needs mom?” What I meant was, that sometimes even the little extra effort of loading up a power chair (Is it charged? Is it loaded?), thinking about accessibility everywhere we go (Will the disability spots all be taken? Is the building/trail/play-scape be something all my kids can enjoy?), makes me a little more of a homebody mama than I’d like to be, than I used to be. Baby/toddler Lamp in a wheelchair was more portable and had more accessibility than big girl Lamp in a (300+ lb.) power chair. So I wonder, am I adventurous enough? Do I let the lack of accessibility boss me around? Do I look at the road less traveled and more often than not think, I just don’t have the energy today?

I’ve been wanting to take a solo road trip with my girls for a few years now. (Not because we don’t want husband/dad to come, but because he doesn’t take that much time off in the summer. Summers are busy for the pediatric dental set.) The fact that he can’t come has been all the more motivation to do it–mostly to prove to myself that I could do it. The very specific nature of Lamp’s differences has always made me incredibly nervous to do a road trip with my girls alone as you can’t simply hand her a water bottle and some snacks because she doesn’t have “grabbing” hands. And we all know that food is key for road trip survival for anyone, most especially young kids. And again, the accessibility, the extra, that is special needs parenting. But here’s the kicker–in the vast world of special needs parenting, Lamp by comparison is not all that extra. Really, she requires little more than my other girls, which is why my original question kinda stung a little when I asked it outloud. Because the real question is, “Am I using our special needs family status as a cop-out?” (And this is why writing is so powerful…. I literally didn’t uncover this until just now as I wrote this out.) 

The answer: I don’t know for sure. But the opportunity/push for a solo road trip finally came this summer when Lamp was accepted into a camp for kids with Limb differences in Texas. Flying was an option, but with the cost of rental car vans and 3 plane tickets it didn’t make sense. Also, I wanted to drive. I wanted to hit the open road with my girls, listen to books on tape, watch field after empty field drag past and see all the interesting little sites scattered between the big cities. Our newer mobility van allows for Lamp to be right in the middle of everyone–just behind the driver and passenger seats, and in front of the last row. I can easily feed her finger foods if needed (it has been needed) and with the help of a new camelbak backpack we were able to make it so she could get a drink by herself, anytime.

Being a blogger + social media person in 2019 I’m very aware of all the wonderful resources out there to keep children occupied on a road trip aside from watching movies. I’ve seen road trip survival guides, passports, mileage countdown sticky notes, homemade travel sized games, etc. As the days kept creeping up to our departure date I had that little brain tickle that kept saying, “Are you going to make some travel kits or print off some sort of cute thing to make this memorable?” Then I finally I looked at my husband and said, “I keep thinking I need to do something more to prepare for the trip, but all I have to do is get in the car and drive right?”

Right. 

The one thing I decided to do was download the Roadtrippers app and find some great little stopping points along the way for our breaks and that was perfect. Because really, besides safe + sane travel that’s all I could ever want in a road trip: Interesting sights with interesting stories, and a little weirdness along the way.

I’m happy to report that so far the trip has been great! After driving for 2 and a half days we arrived safely in San Antonio. Here are the highlights so far:
Being On the Road
Our first day we were headed to Memphis–a good 7 and a half hours. which was touching the edges of our daily capacity to be in a small confined space together. But I drove and my girls watched a lot of movies. (pro tip: Don’t get caught up in nostalgia and let your kids watch Grease because it actuality it’s super date-rapey and the fun musical numbers don’t make up for it!) I also listened to Where’d you Go Burnadette (I really liked it! The movie is coming out soon) and I tried to get the girls interested in The Hobbit, but it turns out that Rob Inglis version (the most popular one) is a little hard for them to understand… so I may have to try a different book on the way home.

Our first stop was Kentucky Stonehenge. This is exactly the random little tid-bits of the great country that I want to see. Why did someone build a Stonehenge in Kentucky? I don’t know? I mean I’m sure someone knows, but I sure don’t! What I do know is that it was a fun, slightly kooky place for my girls to run around and stretch their legs in the rain. Kentucky Freaking Stonehenge. I love it. We also stopped at Graceland, Billy Tripp’s Minefield (a large-scale installation art piece started in 1989), Crystal Shine Grotto and of course we paid homage to Chip and Joanna on our way through Waco and ate at Magnolia house and I have to say, the food was fantastic.  On day two, there was a sudden tornado warning that popped up on my phone urging me to SEEK SHELTER IMMEDIATELY! That was a slightly scary 30 minutes as we pulled over under a gas-station awning with other road-warriors, huddled together in the car hoping a tornado wouldn’t touch down as we watched the wind and rain whip past us. Thankfully nothing too serious ensued, but as we got back on the road we saw multiple pieces of large scale metal debris. It could have been worse. I’m sure that moment will be etched into the collective memory of this adventure.

When Charley Met Emma Reading
Our prime story time years were spent here in San Antonio where I used to take Lamp and Big sister to Twig Bookstore to hear the most amazing story time reader ever, Miss Anastasia. (If you follow me on Instagram you were able to see Miss Anastasia’s skills in my stories last week.) I’m not sure if you’ve ever really heard a book read well, until you’ve been to Miss Anastasia’s story time. She is a treasure. And when my book first came out I knew I wanted to go to San Antonio to do a special When Charley Met Emma story time, and last week that dream came true. Usually when an author visits they do the reading, but not this time! I wanted to hear Miss Anastasia’s interpretation and I knew the kids would love to hear it in her voice. She didn’t disappoint! Not only that, but for the craft she had the kids try to write “me too” with their feet and they loved it. It was such a fun, full circle moment for me to come back to San Antonio, to our story time and to have Miss Anastasia read my book.
Dropping Lamp at off Camp
As I mentioned above, the entire impetuous for this trip was to bring Lamp to a camp for kids with limb differences. I’m sure a report of Lamp’s camp will be its own post, but LET ME TELL YOU I don’t think I’ll ever forget the sight of seeing a bus load of kids entering a room with their wheelchairs, prosthetics, crutches, missing limbs and atypical limbs and seeing Lamp giddy with excitement. For the first time in her life she was going to meet a new group of kids and she wouldn’t have to explain herself. She could just be. She also knew she was going to a place designed FOR her, not against her. A place where someone would be there to help her do anything she wanted to do. For kids like Lamp, that’s the real-deal magical kingdom right there. Accessibility + Belonging.

Friends that feel like family
We’re lucky enough to have some serious ride or dies here in Texas and our families have been having the best time. It’s that rare magical combination where the kids (who haven’t been together in years) seamlessly fall into a comfortable rhythm of playing, watching movies, snacking, jumping on the trampoline, repeat. And us parents can hang and talk and co-mother all day. (Or not hang all day. We love soup.) But really, it could be difficult to hand over your house to friends for a week and likewise take up residence in someone else’s house–you don’t want to step on toes, you want to be helpful and not in the way. It’s a test of a good friendship and I think it speaks well to our friendship that being here, sister-wiving it for the week has overall been a fun, bonding experience.

That’s it for us right now. We’re having a great time. Knock-on-wood it’s been surprisingly fun and easy going. That being said, the ride home–when we’re ready to get back to our beds and our space–might feel a bit longer.
XO Miggy