"Holding Her Own"

I realize that Scott and I sound like a broken record now when people ask us how Annie is doing. "She's holding her own" is our standard, oft-used response. It's so difficult to explain to everyone the waiting game that we are in right now. We are just waiting from one echo to the next, hoping upon hope that her heart will continue to improve. Cardiomyopathy in children is so complex and so little is understood about the path it will take in each individual child that no doctor -- even the wonderful ones at Children's -- can predict what the future holds for Annie.

Further complicating our ability to respond to questions is our history riding this roller coaster. Namely, we have been down the path of improvement before. Last summer, as we went from fetal echo to fetal echo, the news slowly got better and better until the last visit (or so we thought!) to Children's when Dr. Levine told us she didn't need to see us again before Annie was born because the thickening was virtually insignificant. So yes, we are so happy that Annie's last echo seemed to show some improvement. But, it is impossible to shout about it from the rooftops. Last summer's experience, culminating with Annie's initial diagnosis with cardiomyopathy in February and the whallop that gave us, has brought new meaning to the term "cautiously optimistic." We are more than cautious about any bit of seemingly good news we receive about Annie now.

On the other hand, I don't want to sound like we are completely down in the mouth about everything and not willing or able to accept good news when it comes our way. I don't want people to feel like they can't ask about Annie for fear that we will sound very negative or down about everything. We definitely are able to take in good news! There is no way to keep our hearts from leaping when any of Annie's doctors find something to be pleased about with her progress, whether it's heart-related or muscle related or ANYTHING at all.

Hence the phrase I recently have realized that Scott and I both cling to: "holding her own." You may have heard it from one or both of us if you have asked about Annie recently! I hope it is an acceptable middle ground that balances our optimism with the reality of what we are facing or may face in the near future.

Right now, we are celebrating our sweet girl and every healthy day we have with her. We are grateful that she is as healthy as she is and that we have not had to face heart failure, extended hospital stays, or the transplant list. The cardiomyopathy foundation's list serve is full of families who have lost children or whose children have been transplanted or spent months upon months in the hospital. Each story reminds me how lucky we are that Annie is ... holding her own.