Prayer Request Needed!!!

Today was one of those life changing event kind of days…the kind that you don’t ever think will happen to you. The kind that come with the feeling of total devastation.

I was in Sam’s buying Ellie’s favorite snacks when a “blocked” call came through on my cell phone. I answered it and it just happened to be our fertility doctor. “Angie I have some bad news,” were the next words out of his mouth. I got that feeling in my stomach like it had just fallen to my feet when he said, “your test came back positive for CF.” WHAT…WHAT…WHAT…Did I just hear what he said correctly? Me?

When Bennett was tested in the hospital we were given the impression that males were more likely to be affected by this inherited disease. When he came back as a carrier we knew either Brandon or myself would have to be carriers. I was shocked to hear those words come out of his mouth that it was me… This meant that Brandon would have to get in to see the doctor immediately and have his blood work done in order for us to get some answers as soon as possible.

I was sad and I cried in the middle of Sam’s. I cried the whole way home as a matter of fact, but I knew at least there would be a way to harvest more eggs and have them genetically tested before it was too late in order to determine which ones would be affected. The other cup half full attitude I had was that Brandon would have to test positive too in order for us to be in big trouble.

I finally got home and got out the trusty laptop. I sat and watched Ellie play and I researched cystic fibrosis. The more and more I read about it the more and more it sounded like symptoms in my life. At 7:30 pm I got that sick feeling in my stomach…like maybe I had misunderstood the doctor and what he was saying to me earlier. I got out his home number and gave him a call.

That single moment…that single call changed my entire life forever…

No, I didn’t completely understand him earlier in the day. My tests revealed that I do indeed have the progressive, inherited, rare genetic disorder known as Cystic Fibrosis.

I have to pause for a second because it still hasn’t settled in and the tears are burning my eyes as they come pouring out…Yes, I have CF not as a carrier but as a disease.

I fell on the floor in our living room shaking uncontrollably. I was scared to death, Brandon was scared to death and Ellie was screaming because I was scaring her. That moment will always be with me as the scariest time in my life. All I know about CF is that it is a progressive inherited disease that severely affects lung function as well as gastrointestinal function. Because it is a progressive disease it affects life span. According to cff.org the average life span is almost 38 years old. However, there are different types of the disease ranging from mild, moderate to severe. I have a mild case, but I do display characteristics of the disease daily. All I have to say is I don’t plan on going anywhere for a while! SO THERE, CF!

Obviously, my thoughts seem a little scrambled up and are not as well worded as they are other times. I am still in shock to be honest. There are so many fears I have.
1. I don’t want to die young…I want to be here for my husband and daughter to watch us grow like I have always envisioned.
2. What can I do to help myself now…what can I take…where can I go to get help.
3. I do not want my precious Ellie to grow up being scared of losing me…the way I always worried about my mom dying from cancer at a young age.
4. I don’t want to leave Brandon here alone with Ellie…There would never be anyone else on this earth that can take care of them like I can.
5. I don’t want to burden Brandon…I know it sounds crazy, but that is how I feel.
6. What about my baby girl…what about all of the things I need to be here to teach her? School, boys (stay away!), girls and how they always talk about each other, college, weddings, babies…LIFE in general.
7. Do I start writing personal journals to Ellie now, so that when the time comes and I am too sick to parent her she will have little pieces of me from now?

I am just scared. Scared, but I refuse to sit back and miss one single day of my life or my baby girls life from here on out. I am going to call the doctor first thing in the morning and go in and pick his brain about this disease and what I need to do to live as normal as possible.

Please, please, please pass this prayer request on to all of our fellow bloggers that we keep up with. We are in desperate need of prayer and guidance while we gather all information we can about this disease.

I’ll leave you with one of the only laughs we had tonight. While Brandon and I were frantically researching around on different sites we came across a list of suggested ways to eat in order to decrease the GI discomfort that is associated with CF and it said to have a high fat, high carb diet. Brandon’s response: “Awesome! Looks like you can eat as many whoppers as you would like!” Except of course I HATE Whoppers! Anyway, prayers and any advice you have about CF are greatly appreciated during this time. I will keep all of you updated daily on my status.

Obviously, we are having to put our IVF on hold for now. We will have to see a genetic counselor before we can proceed with any other fertility treatments...we have to figure one life out at a time...