Tuesday, January 15, 2013


When we were at CHOP (The Children's Hospital of Philadelphia) last year for Ella's fundoplication revision, I was asked to participate in a study about decision making by parents of seriously ill children. As evidenced by this blog, I have never been shy about sharing my thoughts and experiences going through this life and agreed to take part. Today, four months later, I received a follow up survey which I just completed.

Many of the questions regarding my current emotions and state of mind were the same: to what degree have I felt anxious/
scared/hopeful/angry/guilty/depressed/proud/etc. As I was checking off my answers, it really hit me how much things have changed for the better in a relatively short period of time.

This past summer we experienced one of the darkest times, a close second to a few years ago when she was barely holding on to life on the oscillator after contracting RSV. This time, it wasn't the result of an acute illness but rather the process of her body and systems failing her. Nothing is scarier than watching your child deteriorate and not knowing how to stop it. I had just made the most drastic decision ever concerning her care by getting her transferred to Philadelphia to undergo a risky surgery. The alternatives we were presented with at our home hospital were risky as well, but also indicated that her quality of life would be drastically reduced. Thankfully, the surgery was successful and Ella is thriving.

It all feels like a dream now; like it didn't really happen. Once we headed home, I did my best to not look back - surely a coping mechanism at least in part. I think it's difficult to really gauge the degree of despair when you're in the moment. You know things are bad, but you're also focused on a solution so there isn't a lot of time for wallowing. But shutting out the experience once it was over didn't allow me to realize how far we have bounced back, until today when I did the survey. The difference is night and day. A complete 180.

There are never any guarantees, especially when dealing with a complex and fragile child. I know that won't be the last time we're faced with a tough situation. As things progress, we understand that our choices will become increasingly unappealing and difficult, but we can also rely on the fact that we have come through those dark times before and are stronger for it.

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