Does CF get any easier?

Madeline and me after a four-hour visit to the CF clinic at Primary Children's
Hospital in May 2009, about a month after she was diagnosed with cystic fibrosis

When Madeline was first diagnosed with cystic fibrosis, Dave and I were understandably sad. I don't think "sad" is really even a good word to describe how we felt. I didn't feel hopeless. I didn't feel devastated. I didn't feel like my world had been shattered. But I was much more than sad.

We hung up the phone after speaking with Madeline's doctor about the positive results of her sweat test and collapsed into each other's arms. There was simply nothing to say that could even come close to touching how we were feeling. I sobbed. We both sobbed. We called our families and cried as we shared the news. We looked at our perfect baby girl sleeping in my arms and wept.

The relief and peace of having a diagnosis was almost tangible, but it was also absolute. There was no more hoping that she would miraculously grow out of her pancreatic insufficiency and start digesting food on her own. There was no more hoping that it was a fluke, an allergy, colic---just one of those fussy-baby-things that new parents have to deal with all over the world. She had cystic fibrosis. And it wasn't going away.

That night we sat at our kitchen table, eating a meal that a sweet friend--herself only three weeks postpartum--had brought to us since she knew we had a long, taxing appointment at Primary Children's Hospital that day. Fresh with the reality of Madeline's diagnosis, there could have been nothing more comforting than a delicious, home-cooked meal that I didn't have to prepare myself. A meal that told me, It's okay. People love you. Heavenly Father loves you. It will be alright. You still have to deal with this, but right now you can just eat creamy chicken rice soup and that's enough.

Madeline in June 2009

After dinner, I looked at my baby and thought about how much I loved being a mom and how much I absolutely adored her. How being her mom filled me up in a way that I didn't even know was possible. And how much I wanted her to live a long and healthy life and have babies of her own that we could kiss and admire together. I wanted her to feel what I felt. I didn't know if she would. And I wept again. I wept at the possibility that some day she would have those babies and then end up leaving them much too young. I wept for the anguish she would feel leaving them behind. And I wept for the anguish they would feel seeing her go. There were just so many questions and what-ifs. And we didn't have answers for any of them.

So when someone asked me recently if CF gets any easier, I had to say, Yes! Absolutely! Cystic fibrosis is undeniably a major part of our lives. But it's not a crushing one. And really, it's not even one that's on our minds very often.

It's true: We dedicate more than an hour a day to making sure that Madeline does breathing treatments and vest therapy that will keep her lungs as healthy as possible. It's part of our morning routine. It's part of our evening routine. Sometimes we have to cut fun activities short to make sure her treatment gets done. We take enzymes everywhere we go. Before Madeline puts even a bite of Halloween candy or a sample at Sam's Club into her mouth, we have to decide how many enzymes to give her based on how much she'll be eating and how high in fat it is. When we set the table for dinner, we put three enzymes out along with the salt and pepper. When I check her backpack before school, I make sure she has not only her mittens but a full bottle of enzymes and an extra high calorie drink that she can have at snack time. If we spend the night at Grandma's house, we pack underwear and pajamas plus her vest and an extra bag with nebulizers and various medications. I spend a lot of time ordering medication and coordinating things with insurance companies and her CF care team.

But I don't cry each time I give Madeline an enzyme. It's just part of eating. Telling her to get her vest on and start her treatment is as normal as telling the kids to wash their hands and pick up the toys before dinner. Cystic fibrosis is an ever-present yet, at the same time, very small part of what we do around here. We deal with it every day, but we don't think about it every day.

Madeline reading a Magic Tree House book while doing her treatment earlier this month

Life with CF really does get easier. Some of the worries never go away and there are unusual issues to deal with that most parents don't have to think about. There are sobering moments and we know that there will be setbacks along the way. But once we dealt with the initial shock and trauma of the diagnosis, we learned that life goes on and is no less awesome because of CF. Once we got over the massively difficult task of learning to do all of Madeline's different treatments, we found that they became very routine. And not only have they become routine, but it has actually become easier to do them as she's gotten older and more independent.

Madeline is coming up on her sixth birthday. She has been swallowing pills since she was twelve months old. She has completely normal lung function for a child her age. And she can set up her treatment by the time I count to thirty-seven. She's healthy. She's thriving. She's normal. She's crazy and funny and enthusiastic and smart and loving. She plays in the snow with her sister and overwhelms her little brother with kisses and likes to draw, play in the dirt, climb trees, build volcanoes, and read. She likes her hair to be unbrushed and she wears polka dot shirts tucked into striped pants. She's fantastic.

There are amazing therapies for cystic fibrosis out there, and more are being developed all of the time. Madeline could easily see a cure in her (very long) lifetime. And we certainly anticipate a life filled with good health and every other good thing she could wish for. In the meantime, we will go on being a normal family. And we will keep packing those enzymes.