Yesterday I learned that a fellow CF (cystic fibrosis) mother’s second baby also has CF, just like her first. This hurt. She, like me, found out she was pregnant with baby number two while struggling to decide whether to get pregnant again at all. CF is genetic, which leaves a 1 in 4 chance of any of your children having CF if both parents are carriers of the defective gene. She, like me, refused any prenatal testing due to the risk of miscarriage and went forward with the pregnancy with all the hope and fear in the world. For her and her family, the 1 in 4 became a reality again. For me and my family, we are still awaiting baby #2’s arrival with hope, while planning for a second child with CF.
If baby #2 does have CF, I’d imagine it won’t be as devastating as the first time around with Maggie. First, I know what CF is now. Second, I know how to take care of a child with CF. But it will still be painful. It will still be the reality of a child who, without advances in treatment, faces an early death from CF. It will be the reality of a life that must be protected from the tiniest of germs and must take daily precautions just to keep her lungs functioning. Could there possibly be a plus side?
I tell myself, yes. There must be a positive side. There has to be an up to every down, right? For me, I think the upside will be the companionship a sibling with CF would bring to Maggie. Yes, any sibling would be a companion. But people with CF can’t be around each other because of the life-threatening germs they can pass back and forth. So unless Maggie had a sibling with CF, the closest she’d come to having someone in her life who truly understood her would be a CF friend she only saw through Skype or talked with online. There’s a lot of isolation in that. There’s a lot of pain in being “the sick kid”. If her sister has CF too, it could alleviate some of that pain.
But that would mean another one of my children would be facing numerous doctor visits, tests, treatments, and therapies. Both of my children would have to deal with blood draws and respiratory therapies while their friends are outside playing. But at least Maggie wouldn’t be alone doing them.
So what am I even hoping for? I don’t know anymore. CF or no CF, this baby will bring new challenges. And I guess I’m ready to face whatever life has in store. What about you?