Living with AMC

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.

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