Monday, November 23, 2009

Another parent's persective


I read this and thought I just had to post it. It was written by a mom who has a three year old son, named Owen with Arthrogryposis Multiplex Congenita.
She has also made a documentary coming out in Jan. of AMC. Can't wait to watch it.

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.
I am looking forward to the movie coming out in Jan. You'll have to watch it too:)

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