A Different World: Having a Child with Special Needs by Susan @ Best Dressed Baby in the ICU

Today's guest blogger is Suzanne from Best Dressed Baby in the ICU.  Suzanne is a very courageous woman and a dedicated mother of a child with special needs. You can follow Suzanne on Twitter @bestdressedbaby. Here is her story.

A Different World

 

This is my first time as a guest blogger and I just want to thank Lindsay for allowing me the opportunity to talk to a new audience! So here's a little background about me: I am the mother of a special needs/medically fragile child – my beautiful Ella Grace was diagnosed at birth with a rare genetic syndrome called Cornelia de Lange Syndrome (CdLS). I have spent the past two years documenting every diagnosis, procedure, surgery and hospital stay since her birth on her Caring Bridge website and only recently began blogging as an outlet for myself.

Since I'm not the mother of a "typical" child, I'm going to write about what I know and that is being the mom of a special needs child. I started my blog to help shed some light on our world so that others can develop an understanding of, and maybe even change their ideas about, families like ours by helping to eliminate the "fear of the unknown".

I'll admit it. Before I became a special needs parent I was scared of people who were 'different'. I feared them because I didn't know how to act around them or what to say. But let's give ourselves a little credit: as humans we naturally fear what we don't understand and it's human nature to be curious about anything that is out of the norm for us. It took me a while after Ella Grace was born to figure this out, but that's why people stare!

In the beginning I would get really annoyed with the stares, like it was a personal attack on my child. But eventually I realized that in general people aren't meaning to be rude. They're just caught off-guard and are curious about something that is different from what they normally see like...say, maybe a baby with a feeding tube coming out of her nose?! Did I ever see or know what a nasogastric tube was before Ella Grace was born? Not so much. And unless you're in the medical field or happen to have a special needs child yourself, chances are you haven't either.

Shortly after realizing this, I had another epiphany: most people aren't even aware that they are staring. And so I noticed that offering a quick smile to "the starer" can be very beneficial to all parties involved by making "the starer" aware of their behavior either prompting them to feel comfortable to make conversation or to go on their way.

The bottom line is that regardless of what is going on with our child, they are OUR CHILD and we are proud of them and love them just as much as we would a typical child. We want to talk about our children but find people in general feel it may be rude to ask questions. For me personally, this is not true. I am happy to talk about Ella Grace. I'm not embarrassed. I'm not going to be upset that by asking a question you are pointing out that she is different (we tend to learn this pretty early on from the doctors!) so please, ask away.

Yes, it can get tiring repeating things over and over, and we have our "days", but for the most part we are dying to talk about our kids just as much as you are. And the fact that most people are afraid to talk to us can make our world feel very isolated at times.

So the next time you see one of us around, give us a smile and ask a question or make a friendly comment. Something as simple as "How old is she?" or "That sure is a pretty bow!" can make us feel like we are part of "normal" society and open the door for a conversation.