When you find your voice.....

I want to write. I really do. I have forgotten how freeing it is, and how personal it can be.

A few weeks ago I stumbled upon a really old picture of me, that was taken right after I moved back to Jersey in 2005. A group of us are on the couch and I'm at the end, writing in my journal.

My Senior year in HS I left my mark as being voted "Best Writer" in our graduating class. Not because anyone read my writing, but because I was reading a book a day, and therefore they assumed that my writing kicked ass. There wasn't a category for "Best Reader".

I have to admit, that watching Sebastian struggle has really made me want to leave my mark on the world. And if I could get any semblance of thought together, I would write a book.

But what about? My son? Who would want to read about a mentally disabled 18-month old? My life? It's pretty boring, I wake up, go to work, come home, play OT/PT with my kid, put him to sleep, watch some TV and go to bed with my hubby. My life is pretty boring, and not intellectually stimulating. The most stimulation I get on a daily basis is running my evening analytics, then sending the report to my boss every day at 5pm.

My thoughts? Which ones! I have a thought every second of every day, but most of them don't make sense. One second they go from clipping coupons, to calling one of Seby's Doctors for a test result, to we are out of paper towels, and crap I totally forgot to bring my external hard drive full of music... God I hope Seby doesn't have a seizure today...

I used to be interesting, I swear! I used to be a dancer, and I used to teach dance. I also used to sing, and perform. I raced cars for a little while, drove 6speeds, and even owned a couple. I used to write really well, and used to even write some songs. I was a very creative person. I was also an artist, the starving kind! I even went to college for Museum Curation & Art History. But like everything else in life, College was expensive and time consuming. I lived on my own from age 17 to present, and had to have a full time job in order to survive. It is difficult to be a full time student and work full time. I've tried on many occasions since graduating HS to finish college. I think I have about a full semester in and still paying off $1,500.00 in student loans... but on the bright side my current job pays me over 40k, and yet that still isn't enough to pay all our bills and keep our heads above water.

So I have thought about what to do with my life that leaves a stance on the world. Who do I admire, and what are my opinions. But my thoughts usually come to an abrupt halt when I ask, "Who will care about my thoughts?"

Then you get married, and you become a parent. You begin to have thoughts an opinions and you slowly forget to ask "Who cares?"

Then you find out in a life changing moment, that your child has a genetic abnormality and it is irreversible.

And your world becomes quiet. You're the one that shuts up.

It takes months before you can open up to friends and family, but most of the time it's to scream. They don't understand what you're going through, or what your thoughts are, or why you're even thinking them. They call you selfish, ignorant, and an ill-competent mother because you should have "known better than to not be financially prepared to have a child with special needs."

You begin writing a list of "Things to never say to the parent of a child with special needs." And you want to tell THEM to SHUT UP!

That's when you find your voice again. Sometimes you'll sing, but most of the time you're screaming. You look at your 18-month old who has yet to say a single word and you think: someone's gotta tell them what it's like, kid!

Then your 18-month old looks up at you, and smiles.

So I have an affinity for my son's shoes....

So I've been asked lately, "Why did you decide to take up blogging again?", "Why did you pick this title?", and "How is your son today?”

I'm glad that people care enough about my son to read his caringbridge page, and call me to ask if there is anything that they can do. I am usually completely stunned and blank when they ask, but just knowing that if I need to pick up the phone and ask for something super random, makes me very appreciative and emotional – which lately has not been rare!

I decided to start writing again for a few reasons. One of which is to keep my sanity. There is something so fluid about creating a conscious thought in your mind and then putting it on paper - or in this case, the internet. If something I say can resonate with at least one person, then I know that I'm not crazy. Yeah, it sounds a little vain, but I'm pretty confident to know that once I fill this blog up to the brim with my family's stories and trials, someone out there will really believe that I'm not nuts, and it will make all these keystrokes worth breaking a nail for.

Another reason I decided to pick up a blog again is because I want to help express my son's thoughts where words for him is really non sequitur.

What do you mean by that Em? Well, my son can't talk, and he may never be able to. But I refuse to put a medical label on my son that states that he is mentally retarded, when as a parent you know what your kid is saying. The IQ test that is used for children/ adults with certain chromosomal abnormalities or mental disabilities is written with the intention that the child/adult can speak. Well what if your child has a chromosomal abnormality like Emanuel Syndrome where 90% of them are non-verbal? I am going to let a test that would frustrate both the child and parents, define my child's mental capacity? I'm just not that kind of Mom. I think this would be a perfect outlet to tell the world what he’s “saying” with my help by using the one tool that he can’t: Words. Maybe one day he'll be able to read this blog and say "Wow, my mom totally knows me, even at 18 months old."

Why the title? In this blog, you will see just how resilient he is. You will see how he overcomes so many obstacles in his little life, and how wonderful this miracle is.