Monday, September 28, 2009


We all went to UVA today for a follow-up for Marissa's heart. LLLLOOOONNNNGGGG day! More tests, but surprisingly she did well. Usually we leave these appointments with major headaches...not today. No good news but no bad news either.

However, at a "teaching" hospital you have one doctor, then another, before the actual doctor comes in. By then you have said all you wanted to say and you just sit in the chair saying "no problems, when do we come back, okay".

You always end the day...tired.

Tuesday, September 22, 2009

Funny Things

Do you ever wonder what children think? She comes up with some funny stuff. Today, she was talking to herself outloud asking questions. An example, "Where are the Mr. Remotes?" She then moves to the other side of me "Oh, there they are". I move them, like she insists, and then she moves around me and says "Oh, there they are again". Never really talking to me, but to herself. Funny.

Ok, so maybe not to all of you. But, remember she is not like every other child out there. Her "sense of humor" is also different- which makes mine- different.

Monday, September 21, 2009

Glimpse of the Past

In short, we had no idea that Marissa was going to have any problems- we expected a healthy, bouncy baby girl. But, instead we were blessed with a little girl who has Chromosome #2 Duplication. Believe it or not, she is it. No one else in the entire world. Just her. With this disorder, she has developmental delays and several health impairments. We have been back and forth to UVA on a monthly basis. We thought we almost lost her at 3 months old, but she has proven to be stronger and stubborn more then anyone can imagine.

After 3 1/2 years of trying to have a child- God gave me the blessing that I was wishing. I wanted a girl- with no brown eyes. That is exactly what I got! So, I can't ask why this happened to me, right?

Raising a child with nothing to compare her too is very hard and frustrating. There is absolutely no information or connection with parents of a child who is unlike any other. Which is why I decided to do this blog. Share my frustrations and my joy with all who choose to read it.

If you are reading this, welcome to my world.

Oh, and P.S.
In my life, I don't have many good days. I guess it is all how you judge it. Tonight, no temper tantrums, no head banging, no throwing hands on the wall.... a good day.

Friday, September 18, 2009

Why am I doing this?

I decided to write this blog for a couple of reasons. The first is to "vent" to the world about all of my ups and downs being a mom of a special needs child and secondly hoping that someone may read this and not feel so alone. Unlike other children, I have nothing to compare to her to and I have no information that would be helpful to predict her future. All I have is the understanding that she is "teaching us". Sometimes this is just not enough.