AMC Convention

AMC’ers and their families in our orange shirts!

Pure joy.

I just wanted to say how incredibly thankful I am that we got to go to the AMC Convention. I haven’t had any time to blog about it and it’s killing me. To say we’re exhausted would be an understatement. Coming back from Seattle so I could jump on a plane to Kansas City was hard. But I’m not even unpacking since the little girl leaves for Philly next week! Her Daddy is taking her for her check up at the Philly Shriners and I’m heading to Northern California to see my new nephew. Our flights are within minutes of each other. Crazy!

So since it’s almost midnight and I have  to be up for work at  5:00 AM, I’ll just give some quick highlights of our trip.

After this week I just can’t wait for Ryan and Laelia’s wedding. They are so good for each other and they both have made declarations of love so it’s settled.  :) It’s the sweetest thing to watch them wrestle!  Plus they bicker like Fred and Ethel!  Adorable! I could listen to them argue and shush each other late into the night every night. It’s the cutest. So glad to spend time with friends! And so thankful they convinced us to go and shared their hotel room!

After this week I realized that this convention was way more like a family reunion than a convention. And everyone was happy to  talk with  Laelia or laugh with her. NO ONE STARED. They  got it. We were understood. Nothing about us stood out. We were normal.  Our friends are amazing.  The convention  was amazing.

After this week I want to modify my home with pull-string light switches and doors Laelia can open and close herself… and a bidet! (Home Modification workshop)

After this week it’s weird to see typical kids without clubbed hands and assistive devices. How boring. :)

After this week I learned that adults with AMC figure it out. They just figure it out. (How To workshop)

After this week I learned that painting with your mouth is sometimes more accurate than using hands! (Painting with Theresa) And Laelia got her face painted by an artist who used his mouth to hold the brush!

After this week I think maybe Laelia should take harp lessons… (Talent Show)

After this week I learned that my OT, Jill Peck-Murray,  made amazing splints for us! And OTs are not all that talented. We were darn lucky. And the fact that she suggested casting Laelia’s wrists  when she was a wittle baby was pure genius.

After this week I learned that if my daughter met a famous movie star on the street she’s be all, “Eh seen one seen ‘em all,” after meeting movie star Theresa! (She is on a DVD after all.) :)

After this week I learned that all our hopes and dreams  are so similar. We all want the same things for our kids. (Hopes and Dreams with Ani)

After this week my daughter has  done more physical therapy than ever before. On her own initiative! It helps when you play wheelchair tag, wrestle and break dance all week!

After this week I no longer freak out when I see another one of my daughter’s birthdays approaching and she still doesn’t walk. Valerie didn’t walk until age four, and  Lorie not until age nine!

During  this week I found out the shoulder muscle transfer surgery I really wanted to ask the doctors about would not work for my daughter. :(   But I also found out lots of other things we could try until they come up with something else for her!

During this week I got to stand up in front of everyone and publicly thank Laelia’s doctor, Dr. van Bosse, who  had of course flown out to the convention to support his favorite kids.

During  this week I felt like my daughter belonged somewhere, and so did I. She was so happy and so active. She even got in trouble! (“Where is your mother?!” Someone asked as she rolled around  on the ground disrupting everything.  HERE I AM!!! SO PROUD!) And she gave me a bloody lip from jumping in the pool  (for the first time)  right into my face! I’ll take it! And did I mention she was break dancing??!!!! With this guy? Yeah he was totally teaching her rad moves! Or groovy moves? Um… Cool moves?  Wait hold up. *looks up lingo of today* Sick moves. There you go. :)

And I was completely humbled, just crushed to the floor, after so many people came up and said they had seen every one of Laelia’s videos on YouTube, or that she was the very first kid with AMC they had seen after their child was diagnosed. Two moms found my blog and it eventually led them to this convention! We’re even popular with Canadians! Hehe. :) Actually the whole trip was all about finding the people who matched the Facebook, blog  and forum pictures. Seeing them in person, hugging them, spending an afternoon at the pub while our kids crashed their wheelchairs into the poor servers… it really just solidified relationships. I’m so glad I went. I will be posting pictures soon. I just need a couple hours sleep and some……….zzzzzzzzzzzzzzzzzzzzzzzzzz.

 

 

 

 

2 Responses to “AMC Convention”

  1. Robin Clark says:

    I am so thrilled that you could go to the convention. Venues for specific causes/interests/conditions are the greatest validation/support/connection ever invented!!! Blessings to you all.

  2. Linda Wesley says:

    Fantastic!! That is great to hear. I hope you get the sleep you need, and soon!

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