Ask a CF patient how CF effects their life you will quickly realize that CF effects every single aspect of their lives, including their family. In Kaylee's short life of 3 years I have been in the hospital 3 times. I know many CFers leave their children much more often or for longer periods of time, but I thought I would share my experience of being hospitalized with a small child at home.
My first hospital stay as a mother was when Kaylee was around 1 1/2. This was my longest stay (seven days) and was the most soul crushing experience I have had as a mother. My husband worked a lot when she was younger and I had never been away from her so I was worried how she would adjust to a whole new routine and one that did not include her mother. I spent most of my stay worried about her, wondering how she was coping, and longing to be with her. She was too young to talk on the phone, visits were hard on her because hospitals are boring, and I had trouble feeling like I was connecting to her. The hardest aspect was that despite trying to simplify what was happening to explain it to her, it was beyond her scope of understanding. I remember thinking that a hospital stay could not get any worse than that particular stay and in most aspects I still agree with that thought.
This most recent hospital stay (8 days) was difficult on the whole family, of course. However, as Kaylee gets older and can understand and process better it is a little less traumatic for everyone involved. She is still too young to realize that most people do not have to go to the hospital and has no idea how serious Cystic Fibrosis is so those extra concerns and worry are both something I have to really tackle yet. She was able to visit everyday and had fun coloring, eating all the good hospital food, and watching too much TV. We spent most of the afternoon together and although saying goodbye was hard, we still got a lot of quality time together. Past hospital stays were hard because she got restless and bored so visits were uncomfortable for all of us. We wanted to be together, but the setting just didn't make sense for such a little kid.
As Kaylee has gotten older sleeping over at her Nana and Papa's house is seen as the ultimate weekend. She was able to sleepover with Nana and Papa a few times while I was inpatient which made the stay so much easier on her (and me). With her grandparents she doesn't feel like she is away from mommy who is in the hospital, but rather having the best sleepover ever. As she gets older I can see this being our saving grace again and again.
I am not going to pretend an 8 day hospital stay is easy on a toddler or her parents. It is hard! So hard! There were tears on all ends and when it was time for her to go home it felt traumatic for her (which was traumatic for me... mom guilt!!), but we were able to stay connected and find fun and laughs in the hospital too.
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