Archive for August, 2009

So many times life dishes us up things we don’t understand. I will NEVER forget the afternoon I got the phone call that my tiny 3 week old baby had tested positive for Cystic Fibrosis. I have never felt that kind of terror and disbelief. Derek and I continued to call the nurse over and over to have her explain what this disease was.

Just maybe one year before the coffee shop my brother works for was selling little red paper roses for a dollar. I bought one and asked him, why roses. He told me the lady that brought them in said it was a disease that affected children and they often could not say the name of it so they teach them to say 65 roses. Such a beautiful name for such a horrible disease. She told him that thick mucus fills their lungs and causes lung damage and death. Oh I was heartbroken to hear there was such a disease and gave all the cash I had in my wallet that day. When we got the call that our daughter had CF that day came rushing back. How does something like this happen? You think it’s one of those unfortunate things that happens to other people, but not you. Well, I was wrong. The first thing I thought was I will not be able to live through this. My heart will not with stand it. I could not eat or sleep. I cried all the time and this went on for a week. Then on day I woke up and I held my little girl in my arms and thought I can do this. I can do this for you. I will fight and we will beat all odds. One day you will tell your great grandchildren when you were born you were not meant to live to see them, but you are a fighter and you did. I will have strength because I expect her to do the same. I will fight with her. That day we signed up to walk for her and at one day short of 2 months old we had earned over $6,000 thanks to love and support of our family and friends. EVERYONE gave the absolute most they could to help us find a cure for our little girl. I will fight for a cure all the days of my life and the day it happens will be the greatest day of our lives. I will never allow myself to go back to that place of hopelessness Because life is not hopeless. Life is worth living and loving. That is the kind of person I want to be and teach my daughter to be. We can over come the odds. We WILL over come the odds.

This video was shown to my mom by her dear friend and then to me. It touched my soul so deep. I would also do anything to give Virginia joy and happiness. I promise it is worth the 10 minutes of your day. It is an inspiration.

I was so sad I didn’t get a picture of the double thumb suck… but then today she did it again! hooray!

Today we had lunch with my mom. It was a much needed outing. Virginia must have felt this was a big deal because she scrunches her nose and breathes in and out really fast and hard when she is excited. Apparently, I did this as a kid too, but now I just clinch my teeth when I’m wound up. I’m sure I’m going to have little broken teeth soon. I’m always all wild and it’s all I can do not to squeeze her she’s so cute. So anyways, this day was very exciting indeed. We saw lots of nose scrunching and happy spitting noises, like a motor boat.  Easy to please just like her mommy. All we need is to hang out with Bami.

scrunched nose

I ran into the new couple that are renting the house up the street that we rented a couple years ago. They have two little kids and we hit it off. They lived on the same street as us in Crestline even! We had a lot of things in common. I went on a walk with her and afterward she asked if I would like to see the house. I went in and told her what was different. A new door, new paint color in the master bedroom, new carpet… then we got to the kid’s room. We walked in and it was the same green on the bottom/blue on the top with chair rail molding we had done for the baby I was pregnant with at the time. I miscarried it at 12 weeks. I didn’t expect it to, but it knocked the air out of me. I just stood there looking at it full of toys and a crib. She said, this one’s cute huh? I said yeah, trying not to cry. She said the owner told her that a girl lived there and painted it for her baby, but then she lost it. I told her yeah that was me… She said oh my gosh I’m sorry, and I knew she had no idea. How could she know, but I was ready to go. I needed to leave. I realized that was the first time I saw that room since. We closed the door the day of that ultrasound and I NEVER opened it again while we lived there. I guess I’m still not ready to open that door.

Derek has been working so hard on putting in the wood floors at our house. I’ve been camping out at my mom and dad’s while he works on them, and I’m really starting to miss him too much. He comes home and works on them until he goes to bed. Our sweet neighbor is helping him do all the work. If not I think this job would never end. I can’t wait to sleep in our bed, snuggled up to my angel…

Poor Derek is missing us too. He says Virginia has grown up in the past 4 days and he’s missing it. It’s so sweet the love he has for his family. He’s an amazing husband and daddy. I know that God helped me end up with him because I could have never known how great he would grow up to be. I feel like we’ve been together since we were kids. (We kinda have really) He was only 16 when we started to date. I was the older women (cradle robber) Ha! It worked out alright for both of us though. We are one happy couple. Virginia will be raised in a house FULL of love, that’s for sure.

Virginia is not big on the whole spoon idea. I give her a spoonful of food and she turns her head and sticks her thumb in her mouth. I pull her thumb out and she turns her head the other way and puts her other thumb in her mouth. We go back and forth like this for a long time most days but today when I let go of one little hand she gave me a look and stuck BOTH thumbs in her mouth. I laughed and laughed and told her she won! That was too smart for any 5 month old.

Those Blue Eyes!

Fun game with mom…

and the thumb!

Today this lady was talking about her pastor and how he had bone cancer it was stage 4 when they found it. She told me that he has made a full recovery. He’s cured! She said you never know what God is teaching us and God always has the last word. She said take good care of your angel, and know that God has the last word. I pray everyday, multiple times really, for her health and happiness. I will do my best everyday of my life to take care of her. I do know that God has the final say and I believe he will bless her. In blessing her I will be blessed beyond belief. I am being blessed everyday with her health so far. God has been so good to us. I’m very grateful for that.

Well, Derek is starting to put in the wood floors we bought in June tomorrow. I’m so excited, but while he’s working on them I have to move me and the baby down to my mom and dad’s house. We don’t want her to breath any dust. So I packed up all her meds, breathing machine, and baby food and came down the street. At least it’s only four houses away so if I forget something I’m not out of luck.  It’s so much work to do anything! Anyways, I’ll post pictures of it when it’s all done.

Yesterday was my dad’s Birthday, today is my mom’s and tomorrow is Derek’s dad’s!! Happy Birthday to our extremely loved parents!! We celebrated my mom and dad’s last weekend with my brothers. Here are a few pictures of that…

Yesterday was my brother Brian’s Birthday. He is the blessing of our family and I always think God knew I needed a little bestfriend and that’s why my parents got the “surprise” of a life time. I was only four when he was born but I would call him my baby.  Now 24 years later he’s grown up to be such a wonderful man. He has the best sense of humor and is sweet, handsome and loving. Yesterday we celebrated him with tons of good food, gifts and a big homemade cake. Derek made a feast fit for a king and my mom made the cake. Oh it was good. I think I’m still full! (oh wait that was the left overs I had for lunch! Ha!) Here are a few pictures of the big day with Uncle Brian.

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