Comments on: Conquering Your Fears As A Parent

By: Roger Armbruster

Roger Armbruster — Wed, 23 Feb 2011 06:19:26 +0000

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.

By: Sherwood and Jocelyn

Sherwood and Jocelyn — Wed, 23 Feb 2011 03:45:58 +0000

Thank you for writing this. It expresses our hearts too.

By: Meghan

Meghan — Fri, 24 Dec 2010 14:40:53 +0000

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!

By: Ann

Ann — Sat, 09 Oct 2010 09:08:06 +0000

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..

By: kaitlyn g.

kaitlyn g. — Thu, 19 Aug 2010 02:24:36 +0000

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.

By: Audrianna McManus

Audrianna McManus — Fri, 14 May 2010 18:58:16 +0000

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!

By: Martha Hernandez

Martha Hernandez — Tue, 27 Apr 2010 06:29:38 +0000

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)