Hope through Heartbreak

There is something that I have been holding back. I don't know if I am writing for complete strangers, family, friends, or friends of friends and family. I am blind to my audience but that is ok. I hope this post will call whomever reads it to research and ask questions about what I am about to write about.

Since finding out I was pregnant (at 4 weeks) anybody who asked what I was hoping to have got the answer “10 fingers, 10 toes, and a healthy baby.” I didn’t think that was too much to ask for. Everyone around me seems to be getting that with their babies… Why would we be any different?


Let me start at the beginning: a little over a week before we conceived (not planned remember) I asked my doctor to go ahead and test me for Cystic Fibrosis since Jorde has a cousin with this vary rare disease. She casually said “girl, that is such a rare mutation, we will worry about that once you are pregnant.” and I left it at that… 5 weeks later we find out we are pregnant. It was an exciting time but we both felt the underlying weight of not knowing. At the same time, my family had never had anything medically wrong with us, not ever! What were the odds? Well, 1 in 25 actually, were my odds and everyone else who has never had CF affect their family. Jorde’s odds were 1 in 8.

At 10 weeks we found out I am a carrier of Cystic Fibrosis. Since then it has been a waiting game. We didn't want to scare our friends and family so we tried to continue life as normal and made the most of the exciting moments we had. Announced our pregnancy on Facebook, we shared the baby’s sex with our family and close friends, created a blog, and posted sonogram pictures on Facebook. Afterall, this is an exciting time and neither of us were going to let worries get in the way of us celebrating the life of our baby girl!

After 5 weeks and a pretty intense test (cvs test) we found out that our precious little girl will be born with a genetic disease called Cystic Fibrosis. For those that find this blog due to a "cystic fibrosis" search, she has the double delta f508 mutation. This is the most common of all the mutations.

Cystic Fibrosis is presented in a person if both parents carry and pass the rare recessive gene... After we found out that we were both carriers the odds for Sloan to actually have CF was 1 in 4.

We found out in our 14th week that she was indeed going to have Cystic Fibrosis. It seemed like the longest waiting game of our life but in reality it was 4 weeks... 4 weeks and our lives were turned upside down. We have experienced a heartbreak that we have never known. We hurt for our unborn child. There are so many questions that we have that can’t be answered until she gets here and shows us just how strong she is.

In the Week since we found out we have met with a genetics counselor, the Head of the CF department at Children’s in Dallas, dropped my current obgyn, and made researching our new hobby. We are very optimistic for our little girl. There is no doubt that she will have the best medical attention and our entire family has jumped right in to learn how to care for her right along with us so that we don’t feel so alone and can trust that when Sloan is with them she will get the same care as she would if she were with us.

At first my thoughts were centered around what she wouldn’t be able to do.. she wouldn’t get to play with her cousins, she wouldn’t get to go to the lake, can’t go to the movies, can’t play on the playground, what about the pools? Can she go to a public pool? My list went on and on. My whole life I dreamt about what my child would be like, what would her childhood be like? It seemed like she was not going to get a chance to be a child.

As Jorde and I got used to the idea that it was a potential she could have CF we slowly stopped worrying about her and feeling sorry for ourselves and the situation we were in and started researching. The more research we did the more inspired we were! There are some amazing advancements they are making and Sloan will benefit from them. It looks like a cure is in sight!

What we want for her is what every parent wants for their child. We want her to be confident in who she is. So what if her daily routine is a little different than the kids she grows up around. We want her to care more for others than for herself. She will have bad days and hospital stays are going to be a part of our future but she is still a very blessed little girl and there are a lot of people out there that are less fortunate than she will be. We want her to play sports! Actually, it is almost required for a CF patient to work out their lungs. Swimming, soccer, basketball, running, snowboarding, wakeboarding, PLAYING.. All really good things that she will be great at!

Again, I don’t know who this particular entry will touch but I urge you to ask us questions. I realized I said nothing about what CF actually does to a person. If you know me call or text, if you don’t know me I would love to get to know you. Please message me or make a comment and I will answer any questions I can. If I don’t know I am excited to research it so I will know next time.

We will be huge advocates for our daughter and for the CF community. There is no time for self pity or thinking “what could have been.” The time is now and we are excited for what the future holds!