07 August 2006

AMCSupport First Convention



This post will hopefully enlighten all of you as to why I have not been posting lately...

My family and I spent this past weekend in Chicago at our AMCSupport.Org’s 1st Annual Convention.

As you guys know my son has AMC (Arthrogryposis Multiplex Congenita): Amyoplasia. I am a member of AMCSupport.Org and co-chaired (with Michelle) our very first convention. Not only was it AMCSupport’s convention but this was the very first time anything has ever been organized for those with AMC.

So this past weekend I got to spend time with all types of people with AMC. There were infants with AMC up to a man that was 50 years old. We got to have our children play and interact with each other. The adult AMCers got to meet other AMCers – there was even one person from the Netherlands! The toddlers got to play with other AMC toddlers. And us parents had a chance to learn from each other. Meet other children like our own children. See how that child has overcome a specific obstacle.

I met so many people. There was this awesome 14-year-old boy who was so quiet and all I could think of, while I looked at him is, wow is this how my son will look like when he’s 14. He was wheel chair bound and had very little use of his arm but he wasn’t limited by much else. He used hooks to help him reach things. And when we had our open forum season and one of the adult AMCers told us parents how important it is for the children to live a normal, healthy life which included going out with friends and driving if possible. This 14-year-old looked intently at his mother hoping she’ll relent. I just laughed because I’m sure when my son is that age I’ll have to have someone prod me along as well.

There was also a wonderful woman named Theresa. She is a wonderful artist, with limited use of her arms. She paints the most beautiful paintings, with the paintbrush in her mouth. She had a workshop with all the children of AMC. And she had all of the AMCers present paint on an easel. I know we'll do something with the painting to help raise money but we will also eventually auction off the painting itself on EBAY. Can I tell you how much I want that painting!?!?!

I cannot even tell you how often I was in near tears. Louie’s condition is so rare. That I have never before seen others that even look like him, and to have a group AMCers with his condition all in one city was absolutely wonderful, and inspiring.

After the convention was over I couldn’t help but feel absolutely proud of myself. Absolutely there were hiccups but the convention was wonderful. Everyone was wonderful. I didn’t do it alone but I absolutely helped bring this together. And I will probably for the rest of my life, be so very proud of myself for doing this. For sacrificing rest, time, energy, money, sweat, tears to bring the entire AMC family together.

So here’s my challenge to you. Is there something you have done that has invoked this type of feeling about yourself? Are you content with living your life only to help yourself and your loved ones (if that)? Don’t be content anymore. Do something that will for the rest of your life make an impact on this world. Make the world a little better. If you’re just working to provide for your family, albeit that’s wonderful, but it’s not enough.

Do something. Change someone’s life for the better. Make an improvement. Make an impact. This convention was absolutely that for me. I will forever know that I helped bring together almost 100 people this past weekend to share, to love, to meet, to hug and to cry. And I am so very proud of myself. I want you to be proud of yourselves too! This is a wonderful feeling that I wish for all of you.

6 comments:

Anonymous said...

I AM VERY PROUD OF YOU!!!

YOU & MICHELLE DID AN AWESOME JOB!!!

I absolutly love that picture of lil louie!!!

I miss you guys already!

Beautiful Blog entry!! :o) You summed it up nicely!

Love Ya Chick
Ani
P.S. See ya in October! Right!!???
I'm making Lumpia!!! LOL

Anonymous said...

I am so very proud of you too R!! & you have a dang good reason to be proud of YOU too!! Ani said it, you and Michelle did an AMAZING Job!! We couldn't have done it without you and I'm so very thankful to have been given the opportunity to meet ya'll!! As an adult AMC'er, I sat & watched Lil' Louie in awe, he has such character! His strength, determination and will power are most def a mirror image of his mothers. & I know without a shadow of a doubt that he truely DOES have what it takes within him already to make a difference in each & every person he comes in contact with.
So are ya ready to pack it all back up and do it again next week?!?!? LOL...The time went by waaaay to fast!!~Jenilee

Anonymous said...

O my gosh R, Jenilee told me to get a kleenex box & sit down & read your blog, & boy am I glad I did!! I ditto what Ani & Jenilee said, you & Michele did an awesome job!! as an adult AMCer I sat & was in awe of not only the kids, but he parents as well! The kids wouldnt be so determined, happy & down right awesome (& cute too) if it wasnt for all the great Mommies & Daddies & extended families! I was so happy to see everyone & to be part of the very 1st convention!! & the time spent painting with the kids will be held in my heart 4ever! I'll let you all know when Im done "finalizing" the painting!!

Anonymous said...

I would like to know more about the surgery and how his arms are doing now - my grandson was born with amyoplasia and he is at Shriner's today (11/16) discussing the surgery he may have on his elbows. Can he pick them up and bend them on his own, how is he doing, are the muscles building? I would love to hear this so I know what to expect and I can tell my son to look at your site so he can learn more

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