Saturday, March 27, 2010

Waiting....waiting.... and more waiting......

Well, here we go again. March has always been one of our hardest months. Its a combination of her getting one year older and the change of winter to spring. She always gets sick in March and sometimes I find myself holding my breath that we make it through the month without a hospitalization.

So here we go again. She now has "pre-pneumonia". We had to take her on Friday to get x-rays of her chest so that they could be sent to UVA. But, no one has called us back. Yesterday, my nerves were such a mess I couldn't even eat. Today, I decided that since she is acting better, then we mind as well make the most of it ande headed to the mall. Now, she is in her crib coughing. Ugh, I guess I screwed this one up.

Hopefully, on Monday someone will call us back and let us know how her lungs are. I am still trying to figure out the mystery of why the hospital closes but the sickness doesn't....hmmm.

Monday, March 22, 2010

Is this what 5 is going to be like????

Okay, so on Saturday we had Marissa's birthday party and so she is "officially" 5. Oh, boy is 5 here with a vengeance. Today, is the first day that she got 3 sad faces at school with the word "defiant" written in her book. I had to go and get her from school and she cried all the way home and for an hour at home. She was whiny, bossy and grouchy. Ugh. Frustration is setting in and the great fear of the unknown- is this what 5 is going to be like?

Friday, March 19, 2010

Turning 5!

Last Thursday, Marissa turned 5. Tomorrow is her big party day. This week, I have noticed that she has started to do more age appropriate things, but yet it is also a reminder that she is not able to do what other 5 year old do. Her birthday is always a celebration. We mark this day by thanking God that He has chosen to give us another year with her. Her life expectancy, like any of us, is a concern. But, they didn't think she'd make it 1 an here we are 4 years later, celebrating.

As I write this, she has curled up next to me on the couch, watching "Dora". In this moment, my heart wells up with all the love I have for her. While she can be quite testy and defiant (or independent- however you want to look at it), most of the time. She can also be funny, loving and gentle.

Happy Birthday, Marissa! Mommy loves you- more then the sun and the moon and the stars in the sky!

Tuesday, March 9, 2010

A Very Long Time...

Okay, so it has been a very long time since I have written. The holidays, work and lets not forget the winter/spring sickness that avails us each year. As Marissa is getting to turn 5, she has "coughed" for the first time. However, her developmental delay, leaves her more frustrated then ever! She has been out of school and driving pretty much everyone crazy. But, she is bouncing back and has begun to eat.

We have learned more about her this past year then we have in the years past. Her birthday reminds us to be thankful that we have had another year with her and that she continues to defeat the odds. The government is trying to take away her services and no doubt that this year will be us more challenges in trying to get her everyday needs met.

I have also decided that this year we are going to have a real party- to celebrate this great milestone. She loves Romp-n-Roll, a local children's gym, and so we are inviting all 10 autistic boys in her class as well as a few other friends. She is excited about having it there. She loves Rompy! I have decided that I did not like 50 people crammed into my house. So it is a win-win situation.

I will also try to be more diligent in writing my blog. Remember I said "try".....