I can still remember the phone call from the Geneticist like it was yesterday.

“The testing showed something. We should meet to talk about the results as soon as possible.”

Our baby boy, Carter Jay, was born on March 27, 2009.  We immediately knew that something was different about him.  To start he was a term baby, but weighed under five pounds.  He also had a cleft lip/palate and was missing his right outer ear. Carter was whisked away to the NICU where he had to be intubated and the doctors began running additional testing.  As the physical differences kept piling up, we were hopeful that these would be the extent of his condition because living in the world of Special Needs was completely overwhelming to us.  We had ZERO personal experience with kids like Carter.

After being transferred to our local children’s hospital, Carter was only a few weeks old when we got the news that he had a Chromosomal Disorder.  To be exact he had a duplication of his number two chromosomes which had attached themselves to a deletion on his number ten chromosomes.  There were no other known cases of this exact diagnosis, so Carter had to write his own book.

Some of the unique traits that Carter picked up from his chromosomal difference were mild to moderate hearing loss, cleft lip and palate, Kyphosis of the spine, and global developmental delays. He also had the most adorable long fingers and toes. Bubba Jay spent ten weeks in the NICU before being sent home on Oxygen and a G tube. I was scared to death to bring this little baby home.  I had no idea what to expect from the world of Special Needs, and to say I was terrified would be an understatement.

If I could go back to the very beginning, there are two big pieces of advice that I would give myself.  First, I would tell myself to not be scared. Just because having a Special Needs child is different….it doesn’t mean that it’s a horrible thing.  As we continued our journey with Carter we soon discovered that it was nothing short of AMAZING.

Carter changed EVERYTHING about our family, and in the best way.  He made us see what is really important. He brought us all closer together…and I’m not just talking about our immediate family, I mean ALL of our family and friends came together to support our little guy.

Every single skill that Carter mastered was cause for huge celebrations. We watched him work hard to perform even the simple tasks which made us appreciate them even more. Of course I had moments when I wished that Carter would have just been born healthy, but only seconds later I would realize that Carter would not have been Carter without his challenges.

The second piece of advice I would give myself would be to realize that doctors DO.NOT.KNOW.EVERYTHING.  There is definitely a reason why they call it “practicing medicine”.  Nobody ever perfects it. I had to be the voice for Carter because if I didn’t speak up for him, then who would?

The toughest part about being a Special Needs mommy was feeling like I wasn’t making the right decisions for him. I guess that I have those feelings at time with my “typical” children, but it seems as though the decisions I had to make for Carter were much more profound.

My heart breaks that our family only got to spend fourteen months in the world of Special Needs.  Unfortunately, our little guy was called to Heaven after his trachea collapsed while recovering from a routine surgery. Somehow I know that Carter completed his job while here on Earth.  He continues to change our lives, and the lives of many others to see that the world of Special Needs can be a wonderful, WONDERFUL place to live.  You just have to give it a chance.

If you are new to the World Of Special Needs, and would like to contact me, please feel free to email me at cartershope@gmail.com.  I hope that you will also consider sharing your story by clicking on the Submit My Story link at the top of this page.