Saturday, March 28, 2009

Spring weather and a new Spirit!

For the last two days we have had 55 degree weather and no rain. I took full advantage of this and mowed the lawn, weeded and trimmed back the hedges. I am absolutely bushed.
I'm happy to report that my Hydrangeas made it...all three (my favorites next to lilacs). Someday I will have a whole mess of lilac trees in my yard. This is my dream.
My trees are blooming and most of my grass survived. I was worried because our winter was so bad. We haven't seen a winter like this in 60 years. When I wonder through the neighborhood I see people pulling all kinds of dead plants out of their yards. I thought for sure my plants were toast. Even my Baby Japanese Maple survived.
Spring is in the air and the flowers are blooming. It is bringing new life to the "White House"...Even my boys jumped in for some good hard work.
I saw a movie and there was a quote in it I really liked.
What sound does a blooming flower make? It doesn't need to make a sound to know it's pretty, it just is.
Of coarse it was in one of my kids' movies but I still liked it.
There's something to be said about giving energy both negative and positive to things. I've given these tumors so much negative energy that I think now is the time to start with some positive. I'm going to try to embrace the Spring and Summer weather with a new positive attitude about everything.

Thursday, March 26, 2009

Maryland Trip

First I have to say a great big THANK YOU to my sister in law Laura for putting up with me and helping me to be not so confused and to find my way. Also, Thank you for helping me step outside of my box...I love you!!!!
I also want to thank everyone who helped get us over there. I couldn't have done it without you and when you read on you will see just how important this trip really was so....
THANK YOU SO MUCH FROM THE BOTTOM OF MY HEART!!!!!!!
We flew in so late on Sunday and our cab ride from the airport was almost $100.00....HOLY CRUD!!! We almost passed out..... We got to the hotel only to find out that no one over there believes in French Vanilla Coffee Creamer....hmmmm right there we should have turned and run but we didn't. We stuck it out.....
The first day was a killer. I had to check in with admissions at 7 and off to testing after.
Blood work
MRI's...3 then
Clinic....done by 5pm...YUK!!!!
Day two....
Hearing and balance....woo hoo kind of fun....7 hours
Day three....ENT... Eye doc and then my eyes were dialated...double YUK!!! 7hours
Day four....Time to go home but not before nurses clinic... and I got to see my New Neuroseurgeon Dr. Ashtegari...

What we found:
A new cyst in my sinuses small but we will monitor.
A new tumor in my left auditory canal small and we will monitor
Two new tumors in my spine, again small and monitoring.

They accepted me into this clinical study. What this means for me is that they are taking on all of my medical bills. testing, surgeries and travel expenses for this. They are the best of the best when it comes to my disorder and I am in good hands.

A new worry. I found out that I am a spontaneous case. I developed this in my mommys tummy when the cells split about the 4th time which means that my children have either a 1 in 2 chance of getting this or a 1 in 4 chance. Scary but at least I have done my research and I know who to call and where to go. I can monitor them and watch for the signs. They will be accepted into the NIH on the same deal as me if they have this too. That made me feel better.

All in all this was a good informative trip. I feel good about going and I know that this is the right place for me to be with my disorder. They really know their stuff.

Thanks again to everyong for all of your nice thoughts and prayers and all of your help with the fundraiser. I really appreciate it. YOU ALL ROCK!!!!!

Friday, March 6, 2009

What a week....

At the beginning of the week Derek's Great Grandma Mimi passed away. She didn't like being called grandma but she was one incredible lady. The last time I was able to spend time with her was when we were getting ready for Mom's wedding and we were making the party favors. It was an assembly line. She filled I wrapped and Dottie tied. I had so much fun. She was an incredible woman and I'm just sorry that I didn't get the chance to have lunch with her where she lived. Derek and I told her we would and we didn't. We just live too far away or weren't down there long enough to be able to visit. And then you have the whole rule "no semi-trucks allowed" I could go on but I dig into the real reason at the end of my blog.
At 1:45am I got a phone call from Derek and he told me that Grandma Juanita passed away. She was the type of woman who always looked fabulous. She would grab your hand when talking to you and you never saw her without her lipstick. Her smile went for miles and you could feel it before you even walked into the room. She let me into her heart and into her family. She is the one who gave permission for Derek and I to get married. She would tell me stories of all her husbands and how she missed all of them. She would point to pictures on the wall and tell me who they were. She has family pictures all over her walls.

This week is a rough one to say the least. I can't imagine what Derek's Mom, Grandma Dottie, sister and Tom are going through right now. I was only graced with knowing them for such a short period of time and I feel like such a great loss has hit our house, and it has. They've known them their whole lives and to not have them anymore is the same as not having my mom.

I think that our society moves too fast and doesn't take time to stop and make time for family. Life isn't always easy. It's not handed to us and we can't always expect things to be a cake walk. We need to work for what we want and we also need to stop and smell the roses. We need to spend quality time with loved ones and enjoy what God has given us. We are not going to be around forever. We need to make the most of the time we have today.

Stop running the "Rat Race"! Stop Chasing your tail. Start walking and skip once in a while. Give an extra hug, just because. Call a friend or loved one just to say Hi! Not just on the holidays.... Make time for them and in the long run you are making time for yourself. Only then are you truly living.....