The Question No One is Asking, Including Myself

It's kind of like the elephant in the room for me. I'm glad no one has asked me. I myself haven't truly asked it. But it's there, lurking, raising its trunk every so often, asking for a peanut.

So let's go ahead and write it out loud...with the latest doctor appointment, what does Kennedy's future look like? What does this mean for her long-term health? Does it affect her life span? Here's the thing - no one knows. And I wouldn't believe anyone who tried to tell us otherwise. We know the possibilities - CPAP, BIPAP, portable oxygen, a portable ventilator. Will it come to any of this? Maybe. When? Who knows. Only time will tell. We know she has Chiari and we know she has Restrictive Lung Disease, either of which could lead to tragedy. There is no way to sugarcoat that.

As most of you know or have read in the past, I've watched her die. That day is etched into my mind forever, the sounds, the sights. Birthdays are celebrated to the extreme and we do all we can to make memories. And we will continue to do so. When Kennedy is 95 and blowing out the candles on her cake with no help of oxygen (she is stubborn, ya know), I want her to have nothing but good memories of growing up. To know that her parents tried to make the most of her childhood, her life. To realize that her diseases may have been front and center at times but we did all we could to minimize them in the big picture.

So we live life. We continue to make memories. We work to get her back underwater before the day comes when she just can't do it anymore. We encourage her to chase her dreams and help her every chance we get. We hope for a long, mostly pain-free, somewhat-healthy life.

And every once in awhile, I throw a peanut to the elephant in the room, hoping he'll be satisfied enough to slink back into the shadows...