Dealing with the Diagnosis of Cystic Fibrosis

Dealing with the Diagnosis of Cystic Fibrosis

The most common responses I hear when I tell someone that Little Miss has a terminal disease is “I’m sorry” and “how do you handle all of that and stay so calm”

Many new parents I’ve talked to who have just received the diagnoses on they baby are feeling a whirl wind of emotions and usually ask if they will be this mad/sad/hurt by it forever. If they will feel this lost and helpless forever, and when coming to terms with it all happens.

I wanted to talk about how we deal with it and how we came to terms with it all to be as calm and “normal” with it as we are now. In hopes that it will help another parent facing the possibility of their child dying before them.

Life is full of sink or swim moments. We experience them and handle them differently but it’s human nature to figure out a way to swim!

To me Little Miss having Cystic Fibrosis is just a part of her. Some times it requires more thought and caution but for the most part she is a normal almost 2 year old. I like to think of it as maintaining healthy teeth. In an average day she has to brush her teeth so she doesn’t get cavities, she doesn’t get rewarded for brushing her teeth or praises because it just a part of life. It’s something she will do for the rest of her life as a part of her body maintenance. This is the same with maintaining lung health, she will have to do vest and breathing treatments every day for the rest of her life. She will receive no praise or reward for this because it’s just a part of her life. I have been told that they should receive praise for doing these things but children are just tiny adults. You shouldn’t go through life expecting rewards and praises, you should do things for self rewards. You complete your treatments, you help keep your body healthy. Obviously there are people who do all their treatments and still get sick and have decreased health, but that doesn’t mean that anyone should just throw their hands up and not do it. You just fight harder and find new ways to fight. With CF what works for one doesn’t always work for the next as the disease varies so much case to case.

I know, it’s your child ,it’s my child’s life we are talking about here. No one ever died from not brushing their teeth but I figure the more normal I make this for her now the more just apart of her life it will be as she gets old. This has already been proven to me multiple times with throat swabs, doctor visits and her treatments. When we were doing the reward/praise system as directed by her doctor it was harder to get her to do anything without a fight and she always expected to get something out of it. But now she just does it because it’s what she has to do.

I am a firm believer in life works itself out how ever it’s supposed to in the end. And if I was only meant to have Little Miss in my life for a short period of time then that’s what it is. Of course I will be heartbroken but dwelling over the what ifs now will only take away from the time I do have with her. You can’t live life stressed. Stressed about money, what might happen, what has happened or drama. It doesn’t change anything to be stressed/worried/upset about these things it just takes up precious time and thought space.

And I know most will think well that’s easier said than done. Which is true, but you are fully capable of rising to the occasion. So start today! Change your outlook and live every day like its a present and your last. Because anyone can die from anything at any time, dying from CF is the least of my worries as a parent of a beautiful little CFer.

How did your family come to terms with CF or any other disease/set back? I’d love to hear your story.