The news from the cath surgeon on Friday put us into shock all over again. For me it feels very much the same as the days following Ramona’s first diagnosis – questions about her future, our ability to face it, fear of losing our daughter, the profound tragedy of it all.

One difference, however, is that we’re not nearly as preoccupied with Ramona’s day to day medical care. On the days before and after last Friday’s cath Ramona was up and about, mixing it up with Simon and being her sweet, goofy self. No oxygen tanks, no feeding tubes, no narcotics, or crazy sleep schedules (besides Simon waking up at 5:30am…thanks Daylight Savings). For Ramona, nothing happened Friday to change her life. Not so for Jane and me.

When we brought Ramona home from her first surgery, we didn’t have the luxury of worrying about her prognosis. It was too big to deal with, too epic. And besides, we had so many things to learn about taking care of her here and now. The daily grind of her first few months was so intense that there was barely room for anything but the essentials. As she steadily improved, we slowly returned to a more “normal” existence. I guess there was no moment where it seemed natural to sit back and say, “ok, let’s start dealing with the big questions now”.

But on Friday those questions made their painful appearance once more. And this time around we have to face them. Reality check. So here they are. What if Ramona can’t get her heart fully repaired? What if she lives to be only 20 years old, or less? How will we help her grasp and cope with that? Will she ever attract a partner? How will this affect Simon? How do we provide the best quality of life for her? How will our marriage survive? The list goes on.

One thing’s for sure – I can’t keep thinking about these things all day long. There’s way too much to do here at home and out in the world, so I’ve come to an uneasy truce with them which goes something like this: Ramona and Simon are God’s children. What potential they have is unknown. They are both beautiful and bring new life into our family. We’re all going to keep doing our best, and try to enjoy one another each day. None of us know what tomorrow will bring. We’re all living this Beautiful Tragedy together.

Thanks for all your support.