It has been almost 2 years since I first posted my question about a documentary on arthrogryposis multiplex congenita (AMC). I have had an incredible journey that has taken me across the United States and to Spain, into the homes of strangers that quickly became family. I have completed more than 70 interviews to date and plan on filming anyone that will share a story.
When I started the project the only goal I had in mind was to find a way to share our stories and increase awareness of AMC. I figure the message would come out of the interviews and I would have enough to tell a compelling story. I have met adult AMCers, families with new borns, teenagers, seniors and those with hearts big enough to adopt AMCers from overseas. The one common thread is we all want to know our kids will be okay. We want to know that life will be good and unexpected just like everyone else. This was voiced not just by parents but teenagers and young adults.
I was fortunate enough to bring along my boy monsters on many of the interviews. For those of you who know the Chaidez brothers, you know they can be a bit wild. I have never been more proud of my boys than I am during the interviews. I will always cherish those long car rides driving state to state for the interviews. I got to see a side of my boys that people rarely get to see. The trips helped give them a wider perspective on life and how to overcome personal challenges. For me, it reminded me of how lucky I am. What a gift Owen was and strangely I am thankful he has arthrogryposis.
I hit an emotional wall about a year back. I had done so many interviews and relived my pregnancy with Owen (and all the negative comments from specialists) that I just shut down. I became so overwhelmed that I could never do the AMC community justice, that I would be letting people down if I didn’t do an excellent job sharing their story. So I struggled with my own insecurities until one day, I woke up and knew it was time to face my fear. The day I knew the documentary made an impact on my kids was the day I found the drawing pictured here in Nolan’s backpack. He had drawn it awhile back and never gave it to me. He said it reminded him of family and being with mom. I keep that by my computer to remind me that this will make a difference for someone.
My 7 year old son drew this as a surprise for me.
My hope is to start posting a story a week or every two weeks. I would also like to write a post about the people featured and share some of the highlights that I didn’t put in the video. No matter what happens I know this was a passion project and the end result should reflect that spirit.
Now it is time to start sharing those stories with you. What do you want to see most? What questions do you have that I may be able to answer? What else can we do to spread the word and increase awareness?
{ 10 comments… read them below or add one }
Oh, Peg, what a wonderful post! I love your little “monsters”–I better since your artist told me he plans on being my son-in-law! They have a ton of energy, and LOTS of love for their brother and his people! Like you we are strangely thankful that our son has AMC as we have made sooo many friends thanks to AMC. AMC is a part of our son and it is a part of our family. We cannot wait to see your documentary.
Thanks Maureen. And Nolan is quick to remind me he already picked out his wife in Philadelphia. So we only have about 10 years until he makes it official.
. Thanks for your support and for welcoming the boys into your familly.
My husband was excited to hear there are other adults with arthrogryposis. He has always been told by specialists that he was the only adult they had met with the condition. He is 43 and living well, even with spinal curvage. I married him just a little over a year ago and am amazed to hear the stories of his childhood and his mother’s fight to keep him out of a wheel chair. He still walks and fishes, and with the exception of a soar day, he lives a full life. He was thrilled to find this site and would love to talk to you. Thank You
Thanks for sharing your story. I have met many other adults who did not meet other adult AMCers until our annual convention. This year is in Orlando, FL the first week of August by the way. You can find details on http://www.amcsupport.org. I do have a bunch of questions for your husband and will email you in a bit.
Peg
I am excited to watch any videos of older children and how they have come to cope with their condition. My husband and I adopted a 3 year old little girl from China with Arthogryposis. The doctors have been very discouraging because of her age she is past the best time to flex her tricep muscle for flexiblity in the elbows. We have been amazed at how she has adapted when we won’t do anything for her. She has to feed herself (not an easy task, I am sure you know), go to the bathroom herself and pick herself up when she falls. It was hard and sometimes felt cruel, but she made enough progress in 5 months the doctors are finally feeling good about P/T and Serial Casting. If she hadn’t made a 10% difference I think we would still be told “Keep doing what your are doing (NOTHING) and we’ll see you in a year.”
Thank you TRINA and Ying Ying
Trina and Ying Ying, welcome and so happy to hear from you. I am currently debating if we proceed with Owen’s 7th surgery in 4 years. I think the hardest part as a parent is knowing when to push and when to let your child be your guide. I have many friends that had great success with serial casting. I have some more questions for you and will email you later this week.
Thanks for commenting.
Peg
I am an adult,actually a senoir with arthrogryposis. It affects my knees. I am 65 years old and have been blessed to have had very loving parents who sacrificed everything to help me live as normal a life as possible. There wasn’t much known about this condition in the 40s and I am still shocked when I meet a medical professional who has never heard of arthrogryposis. My mobility is limited, and I use a cane, and on occasion a walker and a wheelchair. With age my condition has created greater limitations but I have lived a full life. Love your son’s drawing. Thank you for your support. Carole with an “e”
Carole,
I would love to hear more about your story and what worked best for you. I am thankful for the internet and social media, I can’t imagine having to manage Owen’s care without the expertise of hundreds of experienced AMCers weighing in. I love sharing the stories of my AMC family and I look forward to sharing Owen’s accomplishments as well.
Peg
Nolan is such a sweetie and so smart. What a precious gift for his mom. Just when you think your kids are monsters they do something like this. Oh and your kids are not monsters. They are boys being boys. I love them all and you too! What you are doing for all of us is so important to me. I sure had fun the meet up in Columbus. See you in KC.
Your fan club is set for KC and ready for an Angry Birds-a thon. Although they all think you carry cookies with you at all times. Owen has been practicing and no doubt, you will be bombarded by the boys.