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Wednesday, June 3, 2009

What would your answer be?

"When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Joey, cannot learn things as other children do. Where is the natural order of things in my son?"

My answer:
Acceptance in today's society is what many people strive for. Whether it be in social situations, your workplace, your school or even within your own family, acceptance usually makes us feel better in one way or another. Most people want to be considered "normal" or "typical" and get uncomfortable when they fear society may look at them in a different way. In our world, acceptance has taken on a whole new meaning. Since our son, Joey, was born in 2004 with a rare genetic condition called Cornelia de Lange Syndrome, we have had to gain acceptance into many new and different social circles. The circles we have been introduced into are circles that the majority of people will go a lifetime without having to know anything about. The hardest thing I have ever had to learn to accept is the fact that I have a child with a disability. Do any of us plan for this? No. We want to be just like everybody else. A normal baby, normal doctor's visits, normal feedings, normal schedule, normal looks from people when we are out in public with our children. Do I think it is fair that my son has to work so damn hard every single day of his life? No. But I do feel that it has made all of us stronger and better people to have been accepted into Joey's world. It is the most important and highest status I will ever gain and I am so proud to wear this badge of acceptance.

So where is the natural, normal order of things for my son? Is it in the doctor's visits, the specialist appointments, the tests, the procedures, the schools, the therapies? Or is it in the joy, the love, the laughter, the sweet moments and all the precious, unbelievable gifts Joey gives and receives every day? Our natural order is wrapped up in all of these things. Joey may not learn and grow as other children do but that's okay. He does things in his own way and in his own time with his own flair. And that order is just fine with me.

What would your answer be?


  1. Rachelle...you have SUCH a way with words. What a powerful post, I am sure you will raise a lot of questions within your readers.

    Although I am not as good with words as you are I will try!!

    I do believe that while "normal" to 'most' doesn't mean squat in the relm of life!! One thing I learned while going through treatment with Charli was that "THIS" is our normal...and that is ALL that matters. There will always be those out there who judge us and others based on how we are "different" then them, but at the end of the day, that is their cross to carry - and has no impact on our life, only theirs. While it sounds cheesey, God knows what he is doing when he delivers children like Joey into all of our lives...not just your life! Joey has taught me so much, and YOU have taught me so much. The lessons you have been put on this earth to teach reach far wider then you can ever imagine Rachelle....

    thank you for this post and making me think -- making me realize to look beyond the obvious!

  2. This is a fabulous post. I agree with much of what you say. However, overall, I'm not sure if I am ready to give a full answer. I'm so just at the beginning of the journey.

    Thanks for sharing. It is important I think.

  3. love this. i too am wondering where mason's niche in this crazy world is... his develpmental 'status' hasn't been as hard for me to handle necessarily.. but his health and what it all means for him has had me up at night and asking so many questions..

    thank you for your thoughts. mason has been a blessing for us and i feel so very honored to be a part of our childrens' world!


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