Thoughts on Chicago

From Jennifer (Adult W/ AMC)

I wanted to take a few moments to share with you my thoughts on our 1st Annual AMCSupport Connection Convention. As I sit here behind my computer screen looking though all the beautiful pictures, I do so with tears in my eyes. I MISS YOU ALL already!! I can't believe the time has come and gone and we are already planning for the next one!!

"OMGosh Vanna is that her???" Those were my first words when I saw what I thought was Ani's car arriving in Lexington. I had never been so nervous yet so excited in my life up until this point. I was actually going to get to meet "Ahhh-knee," who up till now lived only in my computer, who's voice was only heard over the telephone, but whose presence had never been very far from my side since her very first, "Hello...Welcome to the group....Enjoy the boards :o)"

AND of course my first thought upon hearing the word "Chicago" will forever be the sound Jeroen saying, "Oh My God" ahahaha. I would give anything to of had that recorded so that you ALL could hear it, hehe I can't imagine what he was thinking when he heard that knock on his door or what was going through his mind when he took that first peak around the corner that Ani & I were hiding behind (laughing hysterically). Which by the way we were later, 'shhh-ushed' by the hotel staff at ohhh about 1am because guests were trying to sleep!! OOPS, who would have 'thunk' that on our first time meeting each other face to face we would be so loud?!? =o)

As hard as it is for most of you all to believe, "yakking" in public for me was about as scary as I'm sure it was for Tom to belt out that tune (which he did amazingly as Ani has already mentioned! I'm SO RSVP'ing for front row seats when you have your first concert you know!!) but I just did it, without even realizing it. There was a moment as I was getting ready for my Reach for a Star workshop with the kids that I thought, how am I going to do this? These kids are going to be bringing back (sometimes difficult) memories for me. We were going to be discussing those moments in our life that we considered 'dark clouds', those not so good moments where we were presented with a situation that we are facing for the first time, for instance those moments when others may not exactly understand our condition and question us about it....or being a teenager you are constantly wanting to go somewhere with friends, what happens when where you want to go is not accessible, there are no ramps, no elevators?? Boy can I remember those days!! The next thing I ask them to do was to find a way in which they could turn those dark cloud moments into Shining Star Moments, ways in which to find the "good," of the situation, it may be to educate our friends about AMC so that they gain a new appreciation for us and how we live our lives or even to educate &/or bring about awareness to the general public about accessibility issues, so that the next person who comes along doesn't have to deal with the same obstacles that stood before you...Proving that even in the face of adversity YOU helped make a difference and you should be proud of YOU!! Dj, Tracy, & Kadi...You did a wonderful job at talking about each and I am SO VERY PROUD OF EACH OF YOU!! This is something I rarely talk about but I still need to occasionally do myself, figuring out a way to turn those 'dark cloud' moments into a Shining Star Moment is not always the easiest thing to do, but there are those out there who are willing to offer you that extra 'nudge' if only you will not be afraid to ask. Someone just recently helped me to realize where my Shining Star Moments are and that in going though each of those 'dark' times, only helps you to become a stronger person!! You know who you are and because of you I will never, ever look at a dark cloud (or brick for that fact lol) quiet the same way again. Thank You!!

As you can see this convention meant more to me than I think even I had realized. But for me, personally, As an adult AMC'er, I had never been in the presence of so many people who could actually say, "I understand" and be able to honestly 'know' the true meaning behind it. For so long I had wondered around life merely searching...for what? I had no clue until I sat in the middle of that hotel lobby when all our AMC families begin to arrive....Kadi was one of the first, she came straight over to me, smiling from ear to ear and gave me a hug!!! I think I almost started crying on the spot. Then I saw the wonder, excitement and smiles on the faces of AMC'ers from infants to adults and I realized, "THIS" was what had been missing from my life. To know that NO I am not alone in my AMC Journey, and that there ARE people who share my same thoughts, fears, joys...not only did I find that in my fellow AMC'ers, but in the faces of each family member that accompanied their child, I saw them actually take that big deep breath when they realized what makes their children different, also makes them unique, makes each celebrated milestone that much more special!! But most of all I saw a look of accepting relief, of being able to say, This Is Who We Are (and at that moment) We've found our place in this world, here among a family created by one mother of an AMC daughter, whom 4 years ago was facing those same unanswered questions, those same doubts, those same fears and whom today can celebrate with the best of us as well as offer a shoulder to lean on, always ready to lend an ear when someone has new 'news' to share or words of encouragement when a day has not gone just exactly as planned. Ani, there are no words to describe all that you mean to me!! You have given me so much more than I ever imagined possible in the way of friendship, a more meaningful purpose in life by creating this support group, after all I would not feel the joy of beginning each day as a member of royalty were it not for you, hehe AND The Royal AMC Family with whom have given me some of the most treasured moments ever, (not to mention a few hard times along the way HAHA!) But I wouldn't want it any other way.

To my AMCFamily who I have yet to meet in person...I'll see you Next Year!!! & To those of you I was fortunate enough to get to meet this year...Thank You for allowing me the opportunity to get to know each of you...Until Next Time!!

From Jeroen (adult w/ AMC)

4:15 pm 6th August '06, Chicago O'hare Airport, Gate C11

So here I sit on a bench waiting for my plane to leave. Checked-in waaaay to early, but that doesn't matter. With some music from my mp3 player I try to relax and prepare for the 9 hours flight back to Holland. I get my digital camera and start to browse all the pictures I have taken since thursday 3th August. Little by little the whole convention passes on my LED screen. Pictures of children playing with each other, crawling, scooting, running or laughing, just as if their less abilities don't bother them. Just only this thursday afternoon confirmed the reason why I dearly wanted to come to Chicago. All these kids, smile, playing and having fun together. Parents meeting each other for their first time in real. Finally finding out who is behind the aliases/member names. I still remember the faces when I introduce (or get introduced) myself. "Hi I am Jeroen from Holland." Puzzled faces stare at me as in shock "woooaa, that is far away." "Yes I know, its a long way but I wouldn't miss if for the world." Even pronouncing my name erupts some laughter and sore tongues. After several tries they give up and ask "Can we call ya J?". SO funny, but sometimes things should be better that way else I feel sorry for them.

Now thinking back about the last few days I knew why I had to come, and understand what great people you all are. What great parents all these children have and all those adult AMC'ers can be a perfect example for them to show what is possible for the future. Believe in your children what they can do by themselves and let them find answers and solutions for problems they find in their path. All these kids need a little guidance, but they all will be very independent in their own way. Just allow some time to let them find it themselves. I had a wonderful time there and it was great meeting you all. /J

From Rosalinda (Lil Louie's mom)

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.

From Andy (adult w/ AMC)

Hi this is Andy, wanted to stop by and say hi to all of you. It really meant alot to me to be able to be in Chicago this weekend and have a chance to meet all of you and hear your stories. I have to admit for me, traveling alone, at times things got overwhelming, but overall I would have had it no other way. I just wanted to say that I had to leave somewhat abruptly on Saturday from the hospital to head back home. It was not my intention to not be able to say goodbye to all of you, but unfortunately my family needed me back home by Saturday night. I wanted to thank Ani for everything, before I found her on Friday night I was getting worried, it was great to sit down with you and talk, it was the first time I ever talked to someone about AMC that knew how I felt. It was great to meet Abby, London and everyone else as well, you truly changed my life forever. Thanks again for everything.

From Josy (Sean's mom)

I wanted to that all the people in charge, of putting together this AMAZING gathering, in Chicago!

Until this past weekend, I haven't met another person with AMC. I found out Sean had it, when I was 5 months pregnant, so I have spent a lot of time doing research on it, since I found out last Oct. Sean is now almost 5 months old, and it was great to FINALLY see others like him- I almost thought there for a minute he was the ONLY one..

So, keep up the good work! And thank you for taking the time for your daily lives to make us all meet, in ONE place!

Much love!
Josy and Baby Sean

From D.J. (14 yr old with AMC)

It was a whole lot of fun! It was better than I thought it would be!

Love,
D.J.

From Tracey (adult w/ AMC)

I just want to say THANK YOU, THANK YOU, THANK YOU to everyone who took the time, energy and money to make this possible especially Michelle, Rosalinda, Ani, Jenilee, and Theresa. This weekend was amazing in so many ways. I can’t describe the feeling of being able to talk to other people about how much multiple surgeries suck and also the blessings that have come with our or your children’s disabilities. I feel so blessed to have met so many resilient children and amazing families. You are all truly amazing people!! I also want to thank the adult AMCer’s, you have given me a revived hope about my future!! Please let me know what I can do to help with the next convention!!!!! Thanks again to everyone who had any part in making the convention possible.

Everyone take care,
Tracey, Ohio

From Theresa (adult w/ AMC)

Heading to Chicago I was a bit nervous, only because it was going to be true, "A moment to be real" (to quote GooGoo Dolls) I was going to paint in front of others for the 1st time! OK not just others, but KIDS with arthrogryposis!! This was something I have only dreamed about. I've been asked many times to demonstrate how I paint, t & have even gone to help a friend do art with diff-abled kids, but I never had the nerve to actually paint. That day finally happened for me & I cant even put it into words. I felt so comfortable with the kids, like I've known them my whole life & painting with them was one of the best days of my life! To see them painting, using their mouth, feet, hands to paint, the look in their eyes as they made their masterpiece, to watch them do art & enjoy it so much was incredible! To be a part of their lives, for only a day will last a lifetime with me! it was an experience I will hold in my heart always... I cant wait till I can paint with them again!!

Ani & family -Im not sure if I can put anything truely in words, I thank you for EVERYTHING you have done
You have all touched my life in a way I could NEVER put in words!!!
I think Jenilee worded it great by saying that every room the kids were in had such a glow & warmth!! Im so happy to have a new family!!! I LOVED meeting EVERYONE!!!

From Donna (Kyle's Mom)
Today, I was realizing (again) what a truly special thing it was that we all participated in this last weekend. When I was sharing the events of the weekend today with Kyle's physical therapist and occupational therapist and I saw how emotionally moved they were when they listened, I truly appreciated this special AMC community my little family has entered into, and I thank you all for that. (Sniff, sniff. Where's that kleenex?)

Donna also shares her thoughts on what she enjoyed @ the convention
I'd first like to commend the committee for a wonderful start. Wow! Every annual convention of any organization starts somewhere. And to have the number of people come that we did, with the dialogue and fellowship that occurred was touching and inspiring!

+ There was a time and place for registration and informal chatting (and with food. Yum!)
+ Nametags were available every day. That really helped me to remember names!
+ The hotel with all its amenities was awesome!
+ Saturday's talks were great: Ani, Tom, and Renee - wow! (I missed the water therapy, so can't comment on that one)
+ All the activities for the children at Shriners - I don't think my son was bored for a moment! Painting with Theresa was a very special event.
+ The opportunity to share personal concerns (through the "tree of leaves activity") was very important!
+ Lunch was provided on Saturday when we were at Shriners - which meant we didn't have to leave to go out for lunch, and that we could spend more time getting to know each other informally.
+ The little details - the T-shirts and pins (to wear) that were available for sale, the business cards, the brochure (in progress), the welcome packet, the photo presentation, etc.
+ The DVD that Theresa made. Wow! (and double wow!)
+ The fact that we didn't have to pay a fee for the event. That really inspired me to focus on fund-raising.

From Rachele (Scottie's Mom)

We had a great time. Thank you!! You did a great job putting this together.

From Michelle (Zoe's Mom)

Hey My Wonderful Friend Ani,

I am not sure if I have ever told you how I found my way to this site. Upon Zoe's birth I was overwhelmed but kept pushing through because once I looked at my daughter and held her in my arms, I knew she was meant only for me and I had to give her all I could. She was my angel and though her arms were not right, it meant even more that she was an angel because she must have wings. When I started back at work I started looking on the internet and I started to cry. My little girl didn't fit in anywhere, and she had more wrong with her than most. Some people didn't do well and I was so depressed. I made up my mind that I would not look at another website. I would not compare my daughter, would not set limits for her in my mind based on what others could do, couldn't do, etc. 3 years later and my mom goes on line and starts looking up AMC again and she comes across Abby's site. She called me on the phone at work and said that I needed to check out this site becuase the mom sounded so much like myself. She read what Ani wrote about the "LobsterBoy" article (Ani I think you might have sworn in it and I have an admitted problem with my "potty mouth"). Anyways, I decided to look for myself and felt a certain kinship, a connection right away. I was so excited when I rec'd an email response to a suggestion I had made. From that point on I was hooked to this site. When the idea of a "Convention" came up, I wanted to help more than anything, for my daughter and my self. You guys are family now all thanks to Ani's love for her daughter. It's amazing what one person can do, and I just wanted to say "Thank You". If it wasn't for you, we never would have found (at least so quickly) so many wonderful, caring people, who aren't just like us, but are pretty darn close.
Sometimes I think you can see God's hand in things and when I saw everyone at the Convention, and thought about the chain of events leading to it, I knew this was where we were all meant to be. This is what was meant to happen for us, for our kids, for the adults with AMC.

Just wanted to let you know and say Thanks. Though I never really thought about Holland as an option, I am glad this is where I ended up, I wouldn't be the same person otherwise! Michelle

From Ani (Abby's Mom)

It was a long drive home from Chicago - but it gave me a lot of time to reflect on this past weekend.  On our way to the Windy City - I was extremely nervous to meet everyone - and of course worried about the weekend going smoothly w/ no chaos or issues.  My nerves were calmed half way through my trip when I met Jennifer (my bestest friend in the whole wide world) in Lexington to make the last 6 hours of our trip together.  It was so much fun going through all the cornfields in Indiana and of course sharing our first meal together as "REAL" friends.  What made it even more fun was the fact that Abby's 60 year old grandmother was spitting SPIT balls at the KIDS!!!  How entertaining was she! :)  I'm just glad Jen's family didn't think we were a nutzo family from the south!!!   Once we arrived at our beautiful hotel - we checked in and somewhat settled in and then devised a plan to meet one of our members from across the pond -  Jeroen - He traveled thousands of miles to be with us this weekend - and we thought we would honor him by making a surprise visit to his room at 11 PM (that's very late in Holland)  We knocked on his door and like kids we RAN away and HID - We left him a "Welcome to America" sign along with some Jelly Beans (They dont' have JELLY BEAN's IN THE NETHERLANDS!!!)  and when he opened the door all we heard was "OHHHHHHHHHHHH MYYYYYYYYYYYYYYYYY GODDDDDDDDD"  It was so funny (you had to be there)  we all broke out in giggles!!!  Well the next day was formal registration and we got to see all of our members check right into the hotel and then register with us.  It was so exciting to see family after family trickling in and knowing they are here for this great event!!  The families gathered in the lobby's lounge area and mom's started talking to mom's and adult AMCer's were talking with other adult AMCer's and our lil AMCer's were playing or coloring with one another.  What a beautiful moment for me - to watch everyone just sitting together, talking like they have known each other for a lifetime.  I often found my eyes welling up with tears as I watch the kids sitting on the floor just exploring each other and playing with toys or coloring Theresa's paintings.   Who knew that with-in one year of creating this wonderful support group that we would be all in one room enjoying one another like family.  The rest of the weekend was just so much fun - Yes of course we had a few chaotic moments (getting lost in the big city of Chicago more then once) & some transportation issues - but all in all It was a WONDERFUL weekend.  I got through my speech with only a few errors - I was extremely nervous & public speaking is my huge weakness - but I did have some of our attendees in tears reading "Our Journey w/ Abby & AMC".  After all was said and done - many of the Adult AMCer's, and many of the mom's came up to me to Thank me, hug me (Sandy - That HUG meant the world to me) or just gave me the "you should be very proud" pat on the back.  Michelle (Zoe's Mom) said "You should be very proud of yourself - do you see what what one person can do?" - "If it wasn't for you we would not be here today"  OMG I just wanted to BALL!!  She is very sweet and kind  - but really Michelle and Rosalinda is the main reason this event was so successful  - Yes I started the support group and yes I am extremely proud of myself for following through on a dream I had but if it wasn't for the committee - there would have been no convention at all!!!   This convention meant a lot to everyone involved - families were able to meet one another - some meeting another AMCer's  for the very first time.  Everyone was able to get to know one another and have cherished moments that we will remember forever.  Theresa's paintshop I know will be something many of the families will keep in the hearts & minds forever.  It was a true honor to have her with us and devote her time & hardwork to our children.  She has a very special gift and we are so honored to have her share that gift with all of us.  We love having you part of our AMC family Theresa!    Jennifer's reach for the stars workshop with the Teens & pre-Teens was also a memorable moment for her and of course the kids because they were able to share their hopes and dreams for the future - Thank you so much for doing this activity for the kids - and of course for everything you do for me and our support group.  Let's chip in and buy us a GPS or subscription to ON STAR LOL  MAPQUEST SUXXX!! :o)   Saying goodbye on Sunday was very hard for some of us! I didn't want to say goodbye - it seemed like the weekend went by so quickly and I didn't have enough time with all the families.  Hugs and tears were exchanged - many last minute pictures taken - and we all went our separate ways.  The most meaningful moment for me - was as I was walking out of the hotel - I was met by D.J.  - our 14 yr old AMCer - He said " I'll see you next year!" and he had the biggest smile on his face!!!  My heart dropped to the floor and tears flowed as he wheeled away. I'm so glad that D.J. had such a good time that he wants there to be a convention NEXT YEAR!!!!  Well,  D.J. - If all goes as planned - I WILL see you next year!!!  I really hope that everyone had a great time at the convention - It was truly an honor for me to be there, to experience such a wonderful event and to meet all of our AMC family.  It was extremely wonderful for me to have my mom there by my side - to help me with my 2 kiddoes w/ NO complaints AT ALL, to be my photographer, &  to be my supporter.  My mom said to me on the way home from Chicago - how proud she was of me and how happy she was that she came - because I think now , she truly understands why I felt the way I felt the 1st year of Abby's life, why I do the things I do (past & present) and even though I'm a stay at home mommy - I really do work hard @ home - not only to take care of my wonderful husband and beautiful children - but to take care of my online AMC family as well.   I have no regrets for any of the choices I made - and I hope I continue to make you proud - I love you mom - ALWAYS!!! 

Love Ya'll Bunches & Miss you guys ALREADY!!!  *sniff* *sniff* Let's pack our bags and do this again next weekend!!! :o))))))))

"I would rather pursue a dream and gain the experience of failure then dream a dream and never pursue it. "