The CF Saga

Once again, elements of my personal life - which I was not prepared to share - have kept me from Blogger. I just find it so difficult to blog when my mind is absorbed in something that I'm not ready to share. But this is something that's never going away, so there's no keeping it a secret... nor is there really any reason to keep it a secret. So without further adieu, I give you "The CF Saga".

As you all know, my husband Ben's niece Lacy has Cystic Fibrosis. If you don't know much about it, check out the CF page on my blog - you'll be an expert in 15 minutes. I'm serious... if you don't know much about it, GO READ ABOUT IT. I'll wait for ya...

Ok, so you're back. Now you know. I just don't like talking about CF with people who don't know much about it, because I find that people tend to assume a lot when they hear a complicated medical term like "Cystic Fibrosis", particularly if they're aware that it's a genetic disorder. They tend to assume that it affects a child's mental faculties and they picture something completely inaccurate. But now you won't do that, because you've been informed.

So, knowing that CF is a genetic disorder, and knowing that both of Ben's sisters carry the genetic mutation that causes CF, we knew that Ben might be a "carrier" too. To be affected with CF, a child must inherit two mutated copies of the CFTR gene - one from Mom and one from Dad (put another way, both Mom and Dad must be "carriers" of a CF mutation). Just having one mutated copy makes you a carrier, but you don't "have" CF. Anyway, at my first prenatal appointment I made it a point to include CF carrier testing in my first round of blood work. We figured that I'd go ahead and get tested since I needed some blood work anyway, and once we had confirmation that I wasn't a carrier, we wouldn't have to be concerned about whether Ben is a carrier.

We weren't at all prepared for the news that we got a week later - that I am a carrier of the deltaF508 CF mutation, the same mutation that runs in Ben's family. It came as a shock to us both, but in the grand scheme it's not all that surprising... CF is rather common as far as genetic diseases go, particularly among Caucasians. 1 in 29 Caucasians carries a CF mutation. I was just SO sure that I wouldn't be that 1.

The next step was to have Ben tested. The fact that his sisters are both carriers certainly wasn't a guarantee that he would be, so we held on to hope - his odds were probably about 50/50. The lab certainly took its sweet time with the results. My results came back within a week so we expected the same for his, but it was just over 3 weeks when we finally heard back. Positive. Ben is a carrier too.

Suddenly this new reality came crashing into our lives. Completely out of our control, utterly permanent and wholly devastating. Now we know that this baby has a 25% chance of being born with CF. And now we know that every baby we ever have will share those same odds. We know that every time we consider having another child, we will also have to consider this risk. With every pregnancy, we will suffer this same agonizing fear and worry. And one day, whether months from now or years from now, we may be faced with a child with CF. This long-anticipated child-bearing season of my life - this thing that I've been so looking forward to and longing for for so long - will be forever clouded. There's just no way around it, and it will never be the same. I will never again have the luxury of simply assuming that we're having a "healthy" baby.

I hate it. I hate it so much. I hate that our precious, innocent unborn children may have to suffer with CF. I hate that we don't get to be like any other "normal" couple that just conceives, carries and bears healthy children without a second thought. I know that every pregnancy has its risks and every parent worries throughout every child's life, but having this kind of information really changes the game. I know what it's like to worry about a pregnancy, to worry about miscarriage, to worry that the baby could be born with a problem, but to KNOW that something so devastating is a real possibility changes everything.

Thank God for God, is all I can say at this juncture. Everyone has their challenges in life to deal with, and right now CF is ours, but I just don't know how people do it without Him. I have never needed someone to release my worries to the way I need Him now. I know that He is infinitely better equipped to handle this situation than I am, and that He has a plan for all of it - He is carefully coordinating even the seemingly insignificant details. I know that He can and will use this situation to strengthen our faith, to strengthen our marriage and to touch lives around us, too. Because of that knowledge, I can look forward to what God has in store for us even as I grieve over this news and this new reality. I can take heart in the fact that He is in control and that He WILL sustain us through whatever is to come.

We're grieving and stressing and worrying, and it has certainly been difficult. I have my moments of peacefulness and my moments of fearfulness, not to mention anger and frustration. But we truly are growing together and learning to cope together, and we're gonna be OK. It will be a long road regardless of the outcome of this pregnancy, but for now we're trying to focus on this baby - this incredible miracle that we've been blessed with - and enjoying our transition into parenthood together.