Driving down the highway of life..sometimes there are curves, sometimes its a straightaway. Most times I am thinking...where's the exit?!?

Monday, April 30, 2007

TIme to look within...

Sometimes in life you are given signs that really show you a direction...

I am getting a feel for where I should be going...

Saturday, April 28, 2007

Where have I been?


The last few weeks I have been like the proverbial ostrich, putting my head in the sand. DOn't get me wrong...things haven't really been bad, actually things have been okay these past few weeks, but it has been busy, I whave not written...blah..blah..blah!
Last weekend I assisted in THe Landmark Forum. For those who know nothing about Landmark, it is an education that has been incredible for me and many others. I am currently taking the third class in the Curriculum for Living. It is enabling me to get the project, Javad's Place, really on the move.
Lacrosse is coming to an end in about 10 days and I must admit I am glad. This season has really burned me out. Right now I am having a challenge with some. On friday, five girls weren't there. I knew about 3, but not the other two. It was a real bummer that resulted in a crushing loss...
I want to get back into the rhythm and write...it just seems that I haven't been really on the ball!
I am working on it! Put it on my list!

Wednesday, April 11, 2007

Lacrosse

Another night, another game vs Sherwood and yet...another LOSS! OMG...thank goodness we don't play them again!

Tuesday, April 10, 2007

Lacrosse

I know that sometimes I ramble about lacrosse sometimes, Tomorrow we play Sherwood for the third time (Yes, that would be the third time!) The last game we played, we lost by 1 point in the last 10 seconds. I really want to win tomorrow. I am frustrated that we can't seem to beat these guys. We are an equal team, if not better...Argh!

Friday, April 6, 2007

What I learned today in Boston



Boston Pizza's look like this! This is Chicken Margherita pizza with mozzerella "blobs" on it (thus the white "circles" on the pizza.) Notice the lack of anything else except chicken. So Connie and I ordered this pizza after we went to restaurant called Bertucci's where we had our first "Boston meal." We got the pizza to go so we could eat it in the hotel room later.

So,we came home from the restaurant and had some pizza...yum!

So you are asking...what did I learn? Well, if I eat this much carbs in too little time I go into a carb COMA!! Yep, took a 4 hour nap! Lesson learned!

More tomorrow! It's souvenier shopping for the fam! For more about this trip read Javad's Journey. Today was an overall incredible experience! Read more there!

Thursday, April 5, 2007

Boston has arrived!


Here is a excellent picture of Connie and I outside the Dream Team Gala. It was fun! We were looking fabulous although there is not a single picture with the both of us dressed up, so you'll have to take our word for it! See that we have make up on...believe it or not we also wore nylons, so it must have been serious! We were classy and sassy ladies!

So, we are in a super sweet room at the Boston Harbor Hotel. We are on the corner of the hotel and have four windows to the outside. The view is amazing. Connie is threatening to stand on the ledge (at which time, I may cry...) but we are sleeping on cloud-like beds. (that's two!) We are going to revel in the fact that there will be no ventilators beeping or pulse-oximeters going off. Ahhh...the freedom of being away. I know I shouldn't be so pleased, but it is nice to get away and we are having a great time. Three years of talking on the phone and we have hit it off. (well, I suppose we hit it off a long time ago, but now we have hit it off in person!) I think that we are going to have a great time over the weekend. (Did you get that I think we're having a great time????)

So tomorrow morning, we go to a family meeting and then we are going to visit the Beggs Lab at Boston Children's Hospital. Saturday is free day to explore Boston. We are going to go crazy...Boston baked beans, Boston Cub gear, Boston Celtic uniform, and finish with a Boston creme pie...will it ever stop? Who knows? Maybe we'll even come home with a Boston Badditude!

Wednesday, April 4, 2007

Off to Boston...


Tomorrow morning (at the bright early time of 5:00 am...yes AM!) I go to the airport to get on the plane for Boston. I am excited, but nervous as well. I am meeting my friend Connie from Texas for the first time, in the flesh. Tomorrow night we are attending the Dream Team Gala and hobnobbing with the creme de la creme. On friday morning there is a family meeting and 18 families will be attending. This blew me away. The Joshua Frase Foundation believes that this gathering will be the largest gathering ever of families of children with Myotubular Myopathy. I have the opportunity to present the Buddy Program to the families and ask them for help. It is going to be an amazing experience.
Will write from Boston! Ta ta!

Tuesday, April 3, 2007

Today's brutal game


Can my girls just get a break? Holy cow!

Tonight's game was something else. The girls really came to play. Can you believe that we lost with only 10 seconds to go? It was frustrating!

The other team was a frenzy of fouls. It was crazy. Even the goalie got a yellow card. I guess that was because she tackled one of our players. It was crazy!

One thing after another, but I don't want to digress. They played great. True rock stars.

Fortunately (or unfortunately) we play this team again. We're going for the win on that one....

Need some visibility

So my friend has asked me to join Technorati as a method to increase my blog visibility. Let's see...

Monday, April 2, 2007

It's an addiction! I admit it!



Okay..I always knew that I am a bit of a reality TV junkie, but I think that I have reached a new level of addiction. I was somewhat interested in DWTS before, but I really like the crop of stars that they have this time. Okay, Clyde the Glide (he did play for Portland in his time!)...love him even if he isn't that great! I love a bunch of them! It's fun to watch and makes me think that even the most feeble (hello John Ratzenberger) can do well! :)
Here I sit, watching my nightly fix....Oh, did I mention the new Bachelor starts tonight? I am such a loser!

Sunday, April 1, 2007

A climbing adventure


So this past week, which was Spring Break for us, we went to Sunriver with our entire family. Now, by entire family I mean my parents, my sister and her two children, David and I and the kids. Sunriver is a resort about 3 and 1/2 hours away. It is a great place to getaway. What we have learned is that is may not be a great place for Javad. Sunriver is in the high desert and each time we have gone there (except when he was barely one year old) he has struggled. Once we had to drive home at 11 pm to take him to the hospital (at 3 in the morning). So, on our way there, Javad had a crazy runny nose. We got there and he seemed lethargic. At 3:30 in the morning, he had a desaturation episode (his oxygen measure) in the 50's (90's is normal). It was a bit scary. We didn't have the oxygen in the room (or house for that matter), I couldn't get the plug from his trach, he was turning gray and was lethargic. I was running through a variety of scenarios in my head, (calling 911, not knowing our address), all while bagging and suctioning clumps from his trach. It is times like this that I remember really how his life hangs in the balance at times!

So the next morning we starting giving him extra water like crazy and, although we didn't get to do all the activities we had hoped, he started feeling better. No bike riding and walking for Javad, but no hospital either! Whew!

So, David and I alternated taking care of him and we did a variety of activities. One of the activites I did was attempt the rock wall. When I was very young I used to climb with my dad. My dad tells a story of me rock climbing (of the real kind) when I was 5. He would tell me where to go (climb to that ledge) and I would scramble up the rock and wait for him, legs dangling over the ledge. Well, this continued until I was about 8 when I realized HOW FAR UP WE WERE! Needless to say, my climbing career ended before the age of 10.

I have wanted to try out climbing for many years. I realize that I needed to approach my fear and confront it! So I went climbing 3 times. The first time, about 2/3 the way up. The second (different route) same result, but finally yesterday I made it to the top...well, close enough that we are counting it! It felt like a great accomplishment. Yes, my sister made it up all three time. Yes, Simon and Adam made it up. Stesha made it about 2/3 the way up! Now I am motivated to take the kids to the rock gym...

All in all the trip was a success. It was nice to spend relaxing time with family. Now back to real life!