Archive for February, 2010

As promised here are the first steps.  Sorry it took a while for me to get this up.

Someday I’m going to give Bobby a big kiss! I love this man! He has been working hard to save my baby’s life before I was even born! I believe in this foundation wholeheartedly. May God continue to bless their mission, our family and ALL of us fighting.

Today is Valentine’s Day, and what better day it tell you a love story.  Our love story… Here it goes

Derek and I met in 1997. We were just kids in tenth grade. We had 2nd period P.E. together. He sat across the blacktop and smiled at me. I was smitten. His bleach blond hair and baggy pants, my oh my!

When we ended up on the same football team the friendship began. I had a boyfriend at the time, but Derek pursued and 2 years later I gave in. Our senior year started and so did our relationship. I told my parents I really liked this boy at school. He worked at Pizza Chalet and my parents went in to check him out without him knowing. Luckily he passed their test. My dad did still answered the door with a “Nice to meet you son, would you like to see my gun collection.” They made quick friends after that.

Derek was fun and exciting. We did everything to together. We became inseparable. He had my heart and I knew there was something special and different about what I had found. We had our hard times. We were so young and went our separate ways after a year and a half together. I was heartbroken and distraught over his decision. My best girlfriend and I moved 8 hours away. That was my “I’m strong and moving on. How do you like that?” Well he went and moved to Utah. I guess he won the “How do you like that” game… A few months later 9-11 happened and I knew his sister was going to New York. As we all were so sad and scared and wanted to tell our loved ones what they meant, I called her to make sure she was not there and she was safe. I gave her my new number and a week later the phone rang and it was DEREK! He called from Utah and we talked for hours. It was like old times. He wanted to come visit and a few months after that visit he planed to move up to where I was. It was wonderful! We were back together and madly in love. Nothing would EVER separate us again.

We got married in 2004 and when we said those vows we absolutely meant them. We have had a rough first 6 years of marriage, with our miscarriages, my trying to bleed to death on him, his shingles due to it all being, a bit too much and now our one and only, sweetest joy of life Ginger Blue having CF. It could have thrown us over the edge. It didn’t though. It is OUR past and OUR future to live together.

We have stood by each other and had the love and support of those around us to hold us up when it gets too hard. Today he told me we’ve been together so long I’ve been his only Valentine. I love that we will be old together and tell our grandchildren we are high school sweethearts. We have grown up together. We’ve made it on our own. We’ve seen hard times and we’ve seen the times worth living for TOGETHER. We need each other and will stand by each other. I found MY soulmate all those years ago on the black top.

I’m living my dream.

Well today I am back and swinging! I had a couple of rough days feeling sorry for myself and now I’m done. I want to tell you what I grateful for instead.

We have been shown unbelievable amounts of love from so many – Family, Friends, new Friends and complete strangers. Our family has gone without to give us what we need to thrive. During a storm we had no electricity my parents gave us their generator and lived in the cold, getting ready for work in the dark or in their cars. Grandparents, aunts & uncles, cousins, and friends have given their money to help us find a cure. They have made sacrifices to give the most they possibly could and then some. I was asked by the coordinator for the walk how we were doing so well already as far as donations. I can take NO credit. It  is all the love and support of people that want to see Ginger grow and enjoy her life. She is how. She has a smile that touches hearts, a giggle that warms them and a spunk that teaches what fighting is. Everyday people join her in the fight. She does the hard part and we lift her up and cheer her on. She is the type of person I want to grow up to be and she is only 11 months. This disease destroyed me but also taught me who I want to be and how strong I can be. I realize the things I choose to think about and focus on are what will set my mood and the feeling in this house. I want to make people feel the way Ginger does. I want to bring out the good and the happiness in peoples hearts. She is my teacher. I have met fellow CF mommies and aunties in this fight and I’m grateful for there love and support and that we can lean on each other. I will be there for them and they ARE there for me. The world is big and scary but full of very kind people. I can’t say enough how grateful I am for everyone that loves us and for the people that take the time to read my heart (this blog) it’s nice to know your feelings do matter and people care to know what they are. I love you all My blue eyed Ginger Blue

wild sink bath

Showing off those pearly whites

She is my life

Derek got me this for Christmas. It’s over our bed to remind me on my hard days.

Please if you have time go over and visit our new friends Sierra and Maddie. They are part of OUR CF family. We fight this fight together and they are sharing their story.

http://65rosesforsierraandmaddie.blogspot.com/

Today was clinic for Ginger and it was a good day, because her lungs were clear. They upped her enzymes because she eats everything and went from the 75th percentile down to the 49th. We will be working hard to bring that back up. They did a throat culture so please keep the results of that in your prayers. This is how we know if any bad bacteria is growing in her lungs.  They also did a CBC to check her iron. I asked if while they were doing the blood work if they would check her potassium because that was why we were in the hospital five months ago. It was really low and they had a hard time bringing it up. I do bananas twice a day everyday now, but still worry why that happened. They never knew why it was low. Well, they wouldn’t test that. The RN we have to deal with for EVERYTHING got really rude with me for asking and trying to tell her why I wanted it. Sometimes she is so nice but most of the time she’s just not that friendly and acts annoyed when we call or like our question is stupid. All the questions we had about the Verex drugs they didn’t know and some had never even heard of it!! They just acted like don’t really get you hopes up. The people you’re talking to online don’t even know if they’re on it… I left feeling really upset and hopeless. I think that is terrible! I feel like hope is so important in this fight and to douse it like that is mean. I have been so happy lately and really feeling like I can make a difference and a cure is on the way etc but left feeling like there was not much to fight for. I hate that feeling. We decided to go talk to people about selling the paper roses for a dollar because Derek said we are fighting for something and we aren’t giving up. He was right and I pulled myself out of my funk and we did really well.  8 business’ on State St in Redlands said yes. It was hard to say over and over, our daughter has Cystic Fibrosis and this is what it is… I had to tell Derek to stop saying the average age because I can’t hear it one more time. It’s too real and overwhelming for me. It was a bit of a hard day when it should have been happy. She is healthy and people want to help us. That is what I have to focus on.

My big girl holding her own nebbie

This is one of the fliers I made to tell what CF is for the business’ selling the paper roses for a dollar.

Tomorrow is clinic. It is our first clinic since November 11th. She was doing so well that they didn’t want to risk her getting sick coming in for a check up. I get so nervous before clinic. Please just pray that her lungs are clear and her weight gain is good and Her labs are good too. We get through this all because of your support so thank you.

Little Ginger is growing so fast here are a couple of her “growing” videos <3

Not long ago we endured two heart wrenching miscarriages. I never understood what kind of pain a miscarriage could bring. I cried many tears over many months. I remember working at a coffee shop where a customer told me, “Your eyes always look watery.” I smiled and said “really?” I knew I was constantly holding back tears but didn’t know you could see it in my eyes. This went on for years. Derek was strong and supportive, but I could not heal my heart. My jaw would lock half closed from the day we lost our first baby until the day Ginger was born. I know this sounds weird but it’s true. I did physical therapy and nothing seemed to help, until my heart was healed. Our bodies hold on to stress and sadness in such strange ways. When we got pregnant the third time, I would see the doctor who at every appointment would ask, “How many pregnancies?” “3,” I would answer. “And how many births?” he would ask. My heart would drop, “zero…” Well during this very scary time God would give me signs that this time was going to be different. I knew I was having a girl, I knew her name was Virginia, and I knew God had his hand in all that was happening. On March 3, 2009 my biggest fear of losing my life long dream of being a mommy went out the window when I heard that little, but very strong cry. I cried with her. I finally was a mommy.

3 weeks later when we got the news she had CF I felt deceived like I again had to worry about losing my hearts desire, but this time it would be even more painful than I ever experienced before. I struggle with these thoughts, but God continues to give me signs the way he did when I was pregnant. I think it really soaked in yesterday that these signs that promised me a baby are now promising me she will be ok. Our cure, or a treatment that would make this disease controllable like asthma is so close. I feel like us getting to sit with the couple that spoke at CF parents night was one of Godsends. The president of the CFF told them he  is in his 70’s and has a bad heart but he believes there will be cure before he dies. This next example sounds silly but I am part of a website called Cysticlife.org It is a facebook type of site that is for people affected by CF. You can ask questions and things like that. You can go on the site and narrow the search to just mom’s in your age range and state to talk to. I was trying to see if I could narrow the search to people that have the same gene combination as Ginger. I wanted to see how they were doing. Anyways I was going to give up because there was no way to do it and most people didn’t even list their gene mutations. I thought in my head I’ll just click on one profile (out of over 900) and if it’s the same mutation then there will be a cure. I don’t know why I thought this because I don’t think this is the was things work or how God talks to us, BUT I clicked on one and there it was. Her EXACT mutation. I was shocked! I mean floored. Her mutation is not a popular one and there are thousands of different mutations you can carry. I felt like God WAS telling me something. Then yesterday I wrote “Today would be a great day for a miracle” within a matter of minutes 3 different articles came out on the Vertex drugs, and how one just finished phase 2 study. These drugs could be as close to a cure as we could hope for. It would be a once a day pill you take and no longer need the breathing treatments, drugs and vest. The only other thing you would have to take is enzymes because the scaring of the pancreas is not reversible. After the three articles came out another CF mom I’m friends with on facebook wrote that she went and listened to the president of the CFF speak. She wrote this: “I went to hear a lecture on this [Vertex drugs] last wk at Albright College by the president of the CF Foundation. This is the most promising news, I’ve heard in the last 24 yrs.  Let’s hope all goes well with this & that we will ultimately have a cure for this horrible disease, in the near future. I was told by him, hopefully 2011-2012!!!! Prayers, lots of them!!!!!”

I can’t explain it but I KNOW in my heart we are going to have a cure for this disease soon. I even talked to my mom about when it happens maybe we will be able to have one more baby, a sibling for Ginger. This is a thought I hardly ever talk about or let myself think about because I thought we would never be able to do and it makes me  very sad.

I have been on cloud nine since yesterday. I truly KNOW we are going to cure this disease. Our money is more important than ever right now. We can make it happen and more quickly if we have the funds to do it. I’m meeting with someone from the foundation today to talk to her about the paper roses you sell for a dollar at stores. I’m going to get them from her and go to all our local stores and coffee shops and see if I can get them to sell them.

I want to thank you all that love and support us in this fight. We will win! I love you all!

My two favorite angels.