Arthrogryposis Multiplex Congenita.
As a parent of a child with arthrogryposis, I know how frightening those 3 words can be the first time you learn them.
I know how your emotions and self-doubt can get the best of you. How you can spend hours questioning what you did or what you could have done differently. The blur of the first year of back to back appointments with therapists, orthopedic doctors, geneticists, insurance claims departments and more.
Now three years later, I also know that it is okay to feel scared, too question if you are doing the right thing or the wrong thing or the not enough thing.
I know that for every ignorant comment someone will make, 10 other people will stop to tell me how beautiful my child is and how lucky I am.
I know that life will never be calm (let’s be honest I have 3 boys, that is NEVER going to happen) but it slows down.
I know that you will find strength when you never thought you had it. You will find faith because you need to believe. You will love and cherish the smallest milestone because our kiddos have overcome amazing odds. (We were told to consider our options with Owen. That he wouldn’t live a week after being born, that he would be a vegetable.)
I learned that doctors don’t know everything. I learned to trust my instincts and find the best doctors for Owen, no matter what it takes.
I also have had the opportunity to interview more than 40 families to date. Some are adults with AMC, others are young adults or parents with small children. For all the information out there about AMC, there is plenty of insight only those in the community get to hear.
Below are just brief excerpts from some of the interviews. It may be a sentence that stuck in my mind or a perspective that would have helped me that first year. I promise to get better about posting.
“Both of my children are blessings. It was hard to see the second one (with AMC) as a blessing when you’re in the middle of the storm, but it is truly just as much as a blessing as my first son. And that’s the biggest reward. I get to be a part of his life, both of my kid’s lives, every day.”
–Parents to Joshua, age 12“Don’t lose hope. There’s a lot of support, especially now. And know that everything will be alright. If you can laugh and have fun–and I keep bringing Theresa up, but her and I, she’s one of the AMCers close to my age. Who better is there than Theresa? She just makes you feel good. That’s awesome. If I could have just part of that and be able to do just a little of what she does in a different way, that’s wonderful. There’s nothing better in life, really.”
–Ward Foley, adult with arthrogryposis, author, motivational speaker and Olympic napper“The first word would be congratulations, because you have to stop and appreciate what you have been given. In the midst of all the negativity and all the foreign words that you are going to hear, you need to remember that this is your child, who needs just as much love as all of the other children do. You are going to have to be this child’s advocate on every single level.”
–Parents to Louie, age 4“I want to imagine, when I think of my son all grown up and when I think of the other children, you know, I want him to say, ” Mom and Dad, you know, having arthrogryposis has been difficult. It’s tough that there are things that I can’t do, but I’m a blessed boy because I’ve been part of this family.” And for all the other kids to be able to say the same sort of things.”
–Parents to Gabe, age 3“It definitely makes you look at people differently and to have a different outlook. It’s hard at times, too, because now you’re on the other side of the fence. You have everybody staring at your kids and asking you questions, and not always being so nice about it. It really does make you think about how you come off to other people and what you are doing and what your actions say.”
-Parents to Haley, age 3 and Mason, age 1
Sometimes the wisest people are the ones that quietly make an impact.
{ 7 comments… read them below or add one }
Hi there i found your site through karen nolan davies. I thought i would have a look ! Its lovely to see that your child survived with arthrogryposis, that is very reassuring for other parents! Sadly i lost my daughter at 6 months into the pregnancy as the hospital told me she would not survive birth , she had arthrogryposis in her wrists and knees and her chest. Sadly we ended it through harsh information given to us from the doctors. I will never know whether it was the right decision we made as there is alot of info on the internet now that i did not know at the time! I wish you and your family the very best and to say thankyou for letting people like me to come along and have a read! This condition needs so much more awareness made for parents . once again thankyoux
Firstly Kerryanne I am sorry for your loss. I am a parent of a beautiful nearly 2 yr old daughter with -Minnicore/Multicore Myopathy and AMC, I too was told that my daughter wouldnt survive birth, she nearly didnt and has nearly died and stopped breathing so many times I have lost count. Karlia has had many lung collapses and chest infections. Yes I have self-doubts, questions fears and yes I am scared as what is to come, You are very right, we need more awareness as a parent to or even not a parent because I was completely thrown in the deep end as I am sure so were many others. No doctors dont know everything, because Karlia is doing so many things they said she wouldnt. There are a lot of children/ adults with AMC but also with other conditions with it, I have talked to many people that stare or smile at Karlia so they have a bit more info on why my daughter is able to flex her leg up and kick herself in the eye. Some are horrified, some are understanding.
hey from Nana at long last I have internet! Some times we winge at the life we have, then an event changes us as people some for the good and some for the worst. Some can’t cope, others find a well of strength in within themselves that they never realized was there.
A disabled child is a shock to the family and will test the strength, love and loyality of any relationship or marriage. More strength to all you, only those who have these precious children know how much effort you put in. Cheers and Rainbows Nana Connal
Nana,
Good to hear from you. I completely agree with you, our kiddos are precious children. And I believe that many find the well of strength within themselves they never knew existed. I know I did and having Owen completely changed my life for the better.
Thanks for commenting.
Peg
I love your quote “I know that for every ignorant comment someone will make, 10 other people will stop to tell me how beautiful my child is and how lucky I am. ” So true!!!
Hello, I am a first time mom, got pregnant at 16 and had a son a month after my 17th birthday. I had a wonderful pregnancy but unfortunately my son was born with amc. I really didn’t understand what that ment or if his wrists were ever going to get better. I had post partum depression for a long time. I couldn’t look at my son without bursting into tears. I asked myself day and night what I did wrong and why him, he never hurt any body, never asked for it and yet his life was destined to be different. My son is healthy and looks like everyother child except for his wrists, they are contracted and makes him hold his hands differently. I have changed my mind set from feeling depressed to feeling thankful. Thankful that I got a chance to meet this wonderful smart little baby that has made my life so much better
Thanks for sharing your story. I agree what often seems like a challenge turns out to be a blessing. Have you visited our support group at http://www.amcsupport.org? If you have any questions regarding splinting or therapy to help your son, there are plenty of resources and other families you can meet.