*Connor, a 5 month old little boy with Achondroplasia passed away October 9, 2009 at 10:30pm, due to complications from his dwarfism. Please keep Connor and his family in your prayers!*

Being a parent of a child with Achondroplasia, you quickly learn to adjust to having a child who is “different”. You learn to live with the stares, the comments. You learn to spell medical terms like “Otolaryngology” and pronounce it properly. You find creative ways to dress your dwarf child and start seeing clothing as not just a piece of cloth, but a potential work of art and how it can be crafted to fit your child.

You learn to accept them for who they are and realize they are just another child.

However, there are hidden complications that can occur at any given moment. A simple thing like breathing becomes an obsession for you. Breathing, come naturally for a majority of people. We do it while we’re watching TV, while we’re driving down the road and while we’re sleeping. Most people don’t even give it a second though, it’s just something that happens.

With Achondroplasia, a primitive function like breathing can be compromised right from the start. I learned this the hard way. I “knew” what to expect, but didn’t expect it to occur.

Knoah stopped breathing. Knoah stopped breathing for 93 seconds. Have you ever tried to hold you breath for 93 seconds? I have, it’s difficult.

When you stop breathing, your body starts to lose oxygen. When it starts to lose oxygen, vital organs such as your brain and heart start to fail.

Breathing.

Each time I hear about a child with Achondroplasia passing, there is usually a main cause. The Foramen Magnum. Most children with Achondroplasia may not make it to their first birthday. This is due to the compression of the Foramen Magnum. In laymen terms, the spinal cord gets pinched and cuts off all signals to the brain, including reminding the body to breath.

We came so close to losing Knoah when he was 6 weeks old. Hearing about Connor, brings back all those emotions. I think that is why I am so passionate about advocacy and providing information.

My heart is breaking right now, because I know what Amanda’s initial reaction was. I know she knew about the ups and the downs, but the downs you don’t expect. Maybe that is why it’s so hard. We know what to “expect” but don’t “expect” them to happen.

Yes, I have a child with Achondroplasia. Yes, I know that on any given night, while I am sleeping, he could simply stop breathing. No warning, no gasping, nothing. Just stop.

I didn’t ask to be a parent of a child with dwarfism, but I was chosen. Out of 40,000 people, I was picked. I believe God has a plan for us all and that everything that occurs has a reason. It doesn’t make this any easier. It doesn’t take away the emotions or fears.

Breathing, a automatic function as well as unpredictable.

Though we may not openly acknowledge it, this is our reality.

Amanda, Scott and Connor you are in my thoughts and prayers.