"Biggest" Episode Ever!!

Parenting a special needs child is like the weather. One minute the sky is clear blue and the next it is a severe thunderstorm. No warning no "beep, beep" from the TV. Its just here. Tonight, this is what happened.

I try to ignore, she comes in the living room, says "mommy" and then proceeds to bang her head on the wall. She cries. I give no response. She moves over the chair, climbs in and says "mommy" and then proceeds to knock off the pictures off the end table. We move into her bedroom, as I say its time to go to bed. She then hollers, "Dora pajamas", I get them out, she then begins to hit her legs and head, because there not the right Dora pajamas. Do I need to say more? It lasted for over 15 minutes. I was defeated. I came out to the kitchen and stared out the window, this is it, the storm has passed. Now the sky's are just cloudy and I am feeling a little blue.

A New Day

Everytime we have to go to UVA, I always think to myself today is a new day. We are going to learn something new about Marissa, have our reality check, and then they send us on our way. Bad news and all. As we are making the return trip home (1 hour 15min) we sit quietly as we try to absorb all the information we just received.

This last trip to UVA was eventful as always. We had to go see a Dentist for the first time and then to the Developmental Pediatrician. We were 1 for 1. Good news at the Dentist, although she did not cooperate at all. Bad news at the Developmental appointment. At 5 years old, we made the decision to put Marissa on a low dose of medication to help with her behaviors. We struggled to make this decision. As we sat acrossed the room looking at one another, watching Marissa with her fixation on the chairs, we only had one answer to try it. This was the worst day. I wanted to cry. I just feel like I could do something different, other behavioral modifications to help her. At the end, he said "You have done all you can do". Really? I have honestly done it all?

So it is a new day. A new day that I never wanted to venture to. A new day where I wanted to change the clock back to when she was 1 and life was easier. Just another day.....

The Biggest Temper Tantrum Ever

Lets start from the beginning. Marissa and I had such a good night. We ate dinner together, she was doing new things and then it came the big one. The one you read about it, but the one you hope will never come. And then at the moment when you least expect it- Wow- its there full force.

So you wonder what was it over, changing her diaper. There was kicking, screaming, head banging, slapping of the legs and hitting. It took me 15 minutes to get her in a position to be able to put her pjs on for bed. I then had to put her straight to be. For both of us. She finally calmed down.

I took her favorite things away, gave her a sad face on her award board, and told her good night. I love that little thing but she can push you to your limit. After about 5 minutes, I went in told her goodnight and tried to process what had occurred. Five minutes after that, she was fast asleep.

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.

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?

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!

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".....