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.
{ 7 comments… read them below or add one }
That’s so beautiful. I have an amazing 18 years old daughter with AMC, her name is Lupita. Every word you say in this article, seems to come directly from my heart. We overcame so much together all these years, but the happier moments are so much more than the sad ones; now a new stage approaches, and my fears come back again. This is the moment when I think, I wish I could do something for her to not suffer or go through the next struggles as a young lady; I wish it was me who will face everything else, and I feel a deep pain in my heart, like if my heart was crying. Then, I lay my fears on my Heavenly Father; He takes everything away once again.
I love my daughter so much; she is so special and beautiful, and that’s true what you say, they have strong light that you are drawn to. She is a special gift from God; she is an example of happiness, light and strength.
I sent you a hug and all my support; I don’t know about your kid with AMC yet, since it’s the first time I go through the website, but just reading this article made me feel so related with you.
My best wishes for you and your family, and for every family with the gift of AMC.
“Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” (Matthew 11:28-30)
i love everything you have said. I am 20 yrs old with an almost 5 month old with this the genetics doctor called it Amyoplasia Congenita Disruptive Sequence. While we were pregnant we knew she was gonna have clubbed feet and hand malformations and she also had gastroschisis, They did a c-section because she was breech and i wasnt aware of anything because of the meds i woke up about and hr and a half after my baby had been born and i couldnt see her right away because of everything they had to do for her with her gastroschisis, which for anyone who doesn’t know what that is its where her intestines were on the outside of tummy, so everything had to stay sterile around her for a while and when i finally got to see her for the first time her arms were straight by her side her right leg stuck straight up in the air and her lther leg was bent and tucked up and she wasnt moving and i had a lot of morphine in me i looked at her and i cryed and wondered what had happend to her. My fiance was watching the c-section the whole time and he said when they pulled her out he thought the doctors had done something to her because this was so unexpected.
We have been through so much now with her. I cant even imagine life without her now. No matter what way she is she is so perfect to us and her problems have helped us be better people and grow stronger together! And like i tell everyone god made like this for a reason!
I have a 20 month old who has arthogryposis – love to read these posts, it’s so nice to see other moms are out there who understand.
I love everything you had to say! I am a Mom to 2 beautiful girls, both born with AMC. I remember after having our first child with AMC my husband and I struggled with the decision to have another. When we got the news that our 2nd child was on the “same path” as they put it as my older daughter. We were filled with many mixed emotions.
My girls are now 10 and 5! We have had and continue to have struggles with their condition. We find ourselves questioning all our decisions when it comes to our girls’ medical care.
Recently we’ve been given the news that they both need new surgeries.. along with that a mountain of “what ifs” and “could or could not happens”. Seeing the devastaion on my 10 year old’s face when we were given the news was extremely heart breaking. I am finding myself loosing sleep over the decision to “interrupt” their lives once again.
Thank you for you words of wisdom.. its helps alot to be reassured that I am not the only one out there with the same doubts.. questions.. etc.. etc..
Hi, thank you so much! You are so brave to write this all out and very encouraging to me. I am 25 weeks pregnant and our son has been diagnosed with AMC and I struggle with the what if’s, and the making the right choices, and the fear of any suffering he will endure, but I too do know that this is all part of God’s plan for us…. I struggle a lot with that but I know that my husband, daughter, and I and all of our family and friends will love him just the same and everything will be okay. I have to remind myself about the blessing that he is growing every day and it is not a progressive condition and for that we are so blessed! Thank you again though – it is so wonderful to know that I am not alone in my fear and seeing others who have made it through where I am and are doing so wonderfully. I wish you and you’re family the best!
Thank you for writing this. It expresses our hearts too.
Thank you for sharing so honestly from your heart. It has touched my heart as well, and it is so good to know that our hearts can feel connected with people we have never met, which gives a sense of stability and assurance that all is well, even when our minds do not fully understand, or have all of the answers. The main thing is that every life has a purpose, and those who are handicapped in some area have a gift and a strength that is even stronger than average in other areas, and their life is equally valuable to any other human life.