Wisdom Comes with Opportunity, not Adversity

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.

Conquering Your Fears As A Parent

Arthrogryposis does not discriminate. While people are born with it, how they chose to let it define them is entirely their own decision. You can make your life a positive experience or you can focus on the negative and bring all those around you down with you.

Since I started this journey almost a year ago, I have had some incredible experiences and met some guardian angels along the way.

I have done more than 40 interviews now in 2 countries and 7 states. I am expecting to do an additional 60 interview by the end of July. My time is spent with adults, young adults, families with newborns and families with younger children. Each time I leave an interview, I take away more than just film. I take away a new way to look at my life and at Owen's life.

I would never change the experience of having an AMC child. Do I wish that Owen would have a life as simple or physically unchallenged as my other boys? Absolutely. Do I think that the hurdles Owen will overcome will make him a stronger person? Absolutely. Do I worry about him every day? You know the answer to that question.

When I meet parents who are debating about having another child, fearful that the AMC may be passed on, I share what someone once told me. " Never limit yourself because of your fears. Face them and believe that you will overcome. Do not focus on what you cannot control and never pass up an opportunity because of a what if."

Sure this is easier said and harder to follow. I gladly would have had more children despite the negative comments from my doctors pointing out my age (36 at the time and NOT old). There is always a chance that AMC can repeat although it is considered rare to strike twice. The second time around though I would know what to expect and now just how wonderful having another child would be. Every AMCer I have met has this strong light that you are drawn to. It goes beyond a pleasant disposition and is something much stronger, much deeper. I do believe a child is chosen to have AMC because of what others will learn from him. Just as I believe all special needs child are chosen and put in the path of those that need to learn the most.

I worry every day that I am not making the right choices for his therapy, his splinting and his surgeries. I worry that I wasn't aggressive enough the first year or maybe I was too aggressive. I worry that we shower so much attention on him that the other boys are lost. I worry that one day he will grow up and not need me as much as he does today. This is all part of being a parent. I am also fortunate to have 700 extended family members to remind me when I forget how far we have come with Owen.

This experience has strengthened my believe in the human spirit. I have fallen in love countless times with the young kiddos and learned more about life from the adult AMCers. Is an AMC diagnosis scary? No. Do I wish that we could trace the cause and make this go away? Sure. Would I ever trade my life for a simpler one. Never. I wake up every morning and realize just how lucky I am to have this life and my family.

So parents, if you are afraid of what ifs, just remember to look in front of you. Your child (children) are all the affirmation you need to close your eyes and jump in.

What Susan Boyle Taught The World

By now, you have probably received the Susan Boyle YouTube clip, an email forwarding the news story, a Facebook posting or a tweet. Susan Boyle, who recently performed on the U.K. television show "Britain's Got Talent." is a 47-year-old unemployed charity worker who lives with her cat in a small village in Scotland.

As soon as she walked on stage, you could hear snickers and see the reaction of the audience. She was awkward and unpolished and we expected it to be a major disaster. We all waited for her to fail. And we never saw it happen. Her voice gave me chills and I was moved because I too expected it to be a joke. The judges apologized and one judge said she had the voice of an angel. She taught us all a very important lesson that night. She responded with dignity and grace, proud to achieve the recognition she deserved for so long.

I would like to think that this viral clip, this story, will change people's behavior on a permanent basis. That in the case of Owen, we won't get stares from people at the park, that kids at school won't bully him and his life will be happy and safe. I know that for some Susan Boyle fans, no longer will a person be judged by their appearance. For this, I thank you and hope you will remember this lesson beyond tomorrow. For those of you who did not see or did not feel moved, you are missing a beautiful moment. Something so rare to touch so many people.

In the past three years, my perspective has changed completely. I used to look at people with physical disabilities and not give it much thought. I may have felt sorry for them but I probably had the expectation they could not do much as I could do. Since I started doing the documentary interviews and raising Owen for the past three years, I have changed and learned so much. A wheelchair gives independence to someone with limited mobility as do braces and walkers. I used to let the equipment get in the way of really understanding the person, now I don't even see it. How would I like you to see Owen? As a happy, imaginative, bright 3 year old with a smile that could melt your heart. Don't let my child's locked or twisted limbs stop you. Please do not let the disability define Owen. See Owen for who he is and who he will become.

Rather than stare, ask if you can ask questions. It's okay, I am happy to tell you about AMC. Don't feel pity for us, we are a happy close knit family and often times, we forget that Owen is "different." Just as a doctor often needs to become a patient to gain compassion, many people need to walk one day in my child's place to change their mind.

So Susan Boyle thank you for standing up and having the courage to be you. To be confident and radiant in your audition, never letting the judges take away your moment. You have become a hero for me. A hero I hope that will reach many people and help them truly open their eyes. From the moment you opened your mouth to sing, you taught us all an important lesson. Susan, you are an amazing woman and someone I will always remember.

Just When You Think You Have It...Back to the Drawing Board

As many of you know, my trip to Ohio was a success. Not only did I survive 9 days, 2000 miles, one flat tire and numerous hours in the car with 3 boys; I completed 10 interviews. I was hoping to get 20 but 10 proved to be a challenge.



The stories I heard and the families I met are completely amazing. So many stories of strength and faith, of family and of hope. I have learned more from the past 9 days of interviews than I could have ever expected.

I came home and quickly dumped my footage and started to process. Previously I spent weeks developing a template and perfecting the story lines. This time I took one look at the pictures and the footage and I had a better idea. So I went back to the drawing board and started from scratch. It was a painful process especially because I didn't make back ups of my selected footage (stupid brain!). But the best part was I caught this early and didn't have to re-edit more than 5 stories. I am confident the new style is exactly what I wanted to portray. I am very proud of the work and hope to have it online soon. (I know I have been saying this for months).

For those of us with AMC or with AMC kiddos, going back to the drawing board is second nature. We may find that a painful surgical procedure wasn't as effective and will need to be done again; we find that insurance companies won't pay for the treatments or the equipment so we need to be creative to get financing; We find that we all do the best we can with what we know at the time. Sometimes we just have to call do over.

This trip really drove that point home. To hear the stories of frustration with the system, with treatments and day-to-day challenges, we need to learn to expect the unexpected and be ready for anything.

I found out that Owen's October knee release (a procedure that almost killed him due to a blood clot) wasn't effective alone. Dr. Van Bosse wants to try an external fixator once Owen recovers from his June surgeries. If you know anything about the Illizarov method or fixators, you know this is every parent's nightmare. And not too easy for the patient. I was so upset and spent the night wallowing in self-pity for me and crying for Owen. But the next day, I woke up and realized I have control over the situation, not the doctors. I came up with a solution that will eliminate surgeries and possibly help many more people in the same situation. Once Owen is out of the casts, we will assume a 1 year aggressive program of chiropractic, acupressure, hippotherapy, aqua therapy and massage to help straighten his legs. I have talked with our team, slowly gathering the medical records and worked out a plan. The doctors tell me it won't work, surgery is the only option. I however love a challenge and believe this is the right way for Owen.

So simply put life lesson #43: always be willing to go back to the drawing board, you never know what you will find.