The Waiting Game


So, daughter number two made her entry into the “real world” on December 8. Katie is a quiet, sweet baby and her big sister Maggie just adores her. It’s been a good week – aside from the hormones and emotions that are wrecking havoc on my body. Oh, the crying. It doesn’t help that I have been filled with anxiety over the results of Katie’s newborn screening test. Maggie has cystic fibrosis. And any other child we have will have a 25% chance of having CF as well. So, granted, I’ve been nervous. However, I spent the entire pregnancy trying to find positives to Katie having CF too. The biggest one is that if they both have CF, then they would have each other to lean on. People with CF aren’t supposed to be around each other because they can pass dangerous germs back and forth. But siblings with CF are together no matter what, so my girls would have each other to understand what it is like to live with CF.

Well, today the newborn screening results came in and Katie’s were normal. We will be doing some more testing (the sweat test) on Thursday just as a precaution. So sigh of relief? Yes. But also a flood of tears. It was like getting Maggie’s diagnosis again. The thought of having a child who has to face being different, and to have to deal with the tests and the treatments is a terrible one. And while I’m grateful that Katie most likely won’t have to go through what Maggie does, I wish Maggie didn’t have to go through it either.

Luckily, I have places to go for support. The other CF families in my area offer me advice whenever I ask for it. Plus, I have an online group of families living with CF who are always on hand to give support and guidance. I will be turning to them for help in raising two children who have such different basic needs. How do you cook for a one child who needs lots of fat and calories, while also cooking for one who doesn’t need those things? And how do you handle allowing one child to get in extra calories through milkshakes and an extra scoop of ice cream while the other one has to eating a regular portion? How do explain why one child has to do special treatments and therapies that take up hours of their day, while the other doesn’t?

There’s so much to consider and plan for. And my mind can only focus on Maggie’s emotional needs for now. How do I raise her to not feel sorry for herself and to remain positive and hopeful? I have a lot to learn I guess. And once the testing is complete on Katie, I will begin my new journey as a mom to two very special little girls.

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About Nancy

I am a freelance writer focused on parenting children with special needs. My articles have been featured in numerous parenting publications and on www.parentingspecialneeds.org. I am the former editor and publisher of Vermont HomeStyle Magazine. I am a wife and mom to a two daughters, one with cystic fibrosis and one who is a carrier for cystic fibrosis.

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