Convention Pictures

My favorite memory at the AMC conference. Scroll down to read about it.

I have finally uploaded all of our pictures! Thanks again so much for those who supported our trip out!

(Please don’t miss the words/links in pink, which, if you click on them, will take you to some really cute videos!)

On July 6th we packed up and headed out to Kansas City for the 6th Annual AMC Conference!



The whole gang. :)

All these people are chasing me!!!

Front of the line (the perks of arriving late to things) :)



Laelia’s old AFOs/KAFOs/Dennis-Brown AFOs that we donated to orphans at the conference.

I was hunting for Laelia’s Dr. van Bosse Fan Club hair bow (that I couldn’t find last second) when I ran into ANOTHER pair of AFOs to donate!

We completely filled the donation box! (And still have two pairs of AFOs  at home!)

Was my daughter ever this tiny?!!



(I think she missed him.)


Screaming for fun!

Just click here to get a sample.

We put them to bed like this…

…and  would find  them in the morning like this!  (They’re still sleeping.) ;)

And they would talk to each other late into the night. It was so cute! To quote Ryan’s mom, “My favorite was, Laelia: ‘Ryan, you have to stop talking soon, it’s bedtime.’ Ryan: ‘Ok’ ….silence for 10 seconds…. Laelia: ‘Ryan, do you want to still talk to me?’” :-D

We ended up watching Dumbo every night. It was fitting since Dumbo had a physical difference and people treated him differently. (Did you know Dumbo’s real name was Jumbo Jr? And those mean elephants changed it just because he looked different?! I think I pulled too many deep things out of this movie due to  the sleep deprivation.)

Checking out the wheels on the bed. (Knee therapy!)

Here’s a video of them sword fighting.

And then there were the Oreos that made them crazy…


And here’s a video of us catching Lightening Bugs (aka Fire Flies), which both Laelia and I had never seen before. Kiersten calls this video the  Watching Alexis Turn Six Years Old video. :)




Click here to see Wheelchair Tag.

Fun, open, flat places to  wheel around!


My amended name tag after Laelia got a reputation for crashing into people. Instead of saying, “Sorry!” over and over I just started flashing the name tag. :)




Laelia took this picture. Pretty good, eh?  This is my bloody lip after Laelia jumped (for the first time in the pool!) right into my face. I was so proud. (And in pain.) We left the pool with Laelia in tears because she couldn’t stay, and me holding a hotel towel up to my face. We were a sight.



The workshops were… um… so exciting! But not for three year olds.

Taking her out of the workshop to play and watch a magic show… also… so exciting?

Click for video.

Waiting for the elevator back up to our room… it was just an exciting trip is all I can say. :)




Ward and Scarman (a doll with all of Ward’s surgical scars on him)

Ward had the kids make their own scar dolls. All those lines on the doll represent scars Laelia has. (All lower body so far, thank the Lord!) They even have matching orange shirts!

Ward loved the kids!

He and Ileana took off with the kids. Yay! Free babysitting!




Theresa is Laelia’s favorite “movie star” who paints with her mouth instead of her hands. Theresa (or Auntie Reesa) has arthrogryposis too! Laelia has been waiting so so so patiently to learn how to paint with her mouth for Theresa.

Click here for the video.


Laelia also got her face painted! Here she is in line. My camera broke so I didn’t get the butterfly on her face. But it was cute! And of course, Chris, the artist, also painted with his mouth! Laelia stayed really still, so whatever magic juice this guy was using, I want some!



Thanks for the tutu, Kiersten! It as perfect for… break dancing? :)

Laelia confidently scooted out into a group of boys and then  Luca “Lazy Legs” Patuelli,  from So You Think You Can Dance, started directing her moves.

You can’t miss this video!!! Kiersten took it, but it was the second time Luca showed her some moves so it was not as spontaneous as the first one.

In fact, here’s a better, more official video done by the AMC documentary gal. Laelia is 4.23 minutes in. It’s short.

But I would love if anyone had that first video when she scooted right into the middle of things and he started telling her how to cross her arms and give a tough guy face and go on her side and lift her legs… stuff she won’t do in physical therapy but she’ll do when break dancing!




Our Ryan (future husband)

Ronan (lower left)

Sadie and her mom, Jessi



Ward aka Scarman (Melanie, yes she definitely is not buying whatever he’s selling!) :)


Parker! And Sean.


Elliot and Abby

Paint-covered Elliot and Rob chasing Laelia

They got her!

Bar flies… I mean FRIENDS! :)

Angie, Sean, Melanie, Ileana and Maria!

And believe it or not, my camera broke on this trip. OR THERE WOULD BE EVEN MORE PICTURES!!! (Thanks to everyone who let me borrow their pictures.)


One of the biggest things I took away from the convention was feeling “normal.” My child wasn’t stared at. Her scooting was normal. Her wheelchair was normal. I started to see kids without clubbed hands and contractures in the airport on our way home as the  different ones. :)  I watched my daughter blossom. She isn’t normally very active (physically) and has no close, local  friends with special needs. But at the conference she was in her element. And constantly on the move! She had wheelchair races, she crashed into her friends’ wheelchairs (and into the occasional person… and hotel  bar server), she got into trouble for rolling in front of the Talent Show stage (“Where is your mother?”), she laughed her head off and painted and wrestled and scooted and practiced standing all the time for fun. She even started jumping in the pool for the first time, surrounded by other kids with AMC. She gave me a bloody lip doing it too! :) :)

But one of my favorite memories is when Laelia scooted her way into a break dance circle. My bull-headed child scooted right into the middle of those tough boys in her little pretty pink tutu. Luca “Lazy Legs” Patuelli didn’t miss a beat and immediately started giving her instructions–”spin around, now put your arms out like this, now go on your side, now cross your arms and give me a tough-guy face.” She followed his every instruction. I think she felt comfortable doing this because she wouldn’t be the “disabled one.” I just realized while writing this that no one made us feel weird for being different. Luca (and the rest of the people there) didn’t ask me, “Can your daughter lift her arms? Is it safe for her to participate? Should you be doing this? Is she okay?” Ugh! Like Laelia is some brain-dead handicapped pity party! These people just  “got it.”  I think it’s important to attend conference because it’s “home.” Because you can be normal here when you can’t be normal around any other group. I went there for medical advice and therapy tricks and came away with so much more. It’s one thing to attend a splinting workshop (which I did), and another thing to talk to some moms afterwards who show you how their splints work, and share skin break-down horror stories and show you what gains their child has made so you see the whole picture. Especially when those moms know what you’re going through and can pronounce your daughter’s condition! It was also nice to see the AMC adults and realize that they are  everyday folk who are personable and well-adjusted. Such a relief. And I also met a few people who didn’t start walking until they were 4, 5, 9, etc. That made me relax about Laelia’s upcoming fourth birthday and the fact that we’ve not taken a step yet. (Unless you count this one in our room with Ryan’s borrowed walking sticks and him cheering her on in the background. “Go Yayeeah!”)

I’ve been able to  make new connections and strengthen old ones because of this conference. I need those connections and that support to survive this journey.


4 Responses to “Convention Pictures”

  1. justin says:

    lovely post :) i wrote a lengthy response, but accidentally deleted it. but to sum it all up, i know exactly what you mean. nicely put. that was exactly the take away i had and posted in my blog too :)

  2. kathy fortier says:

    this was was fantastic blog post, thank you. i felt everything you write about regarding being with our own ‘tribe’ and being normal and not having to explain anything…and the kids can feel relaxed and just be themselves.
    i am the grandmother of Ronan.
    keep up your blog…it helps all of us.

  3. Lauren B says:

    SO fantastic! The pictures are great and as always, great post. Laelia even looks like she is blossoming in the pictures <3. She is an incredible little girl and she is going to do EVERYTHING!

  4. Robin Clark says:

    I’m thrilled that you and Laelia could attend the convention and find your place in the AMC family there. Thank God for it and all of those who organized it, participated and attended. Ryan’s a readhead too I see!

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