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...

The Struggles of a Happy Person

I consider myself a happy person, who tries to live a happy life. This hasn't always been the case but I've worked hard to get to this point. This journey has taught me not to worry what others think of me (although I'll admit I've been struggling with the weight I've gained the last few years with help from some needed medications), to remove negativity and negative people from my life, to accept life for what it is. I've learned to roll with the punches, to dance in the rain instead of waiting for the storm to pass, to just let it go (which I can't type without hearing my nieces sing it with their 4 year old flare, which helps a lot). Happiness is a choice, and I choose to be happy.

But with this, I've learned what the biggest struggle is for happy people, or at least my biggest struggle....being unhappy. (not to be confused with depression) My happy life was rocked back in August with a simple x-ray. It was rocked even more with an MRI. It was rocked even more with a brain surgery and difficult recovery. None of it mine, but I could have handled it all better if it were. I lived for months in an unhappy foggy world. It consumed my world, and made the happy shrink off into the distance. No matter what I tried to choose...happiness was just nowhere to be found. So I took the advice of C.S. Lewis and let go of the monkey bars in order to move forward.

  

The problem with that is the landing hurts, which makes me just as unhappy. So yeah, she was diagnosed with a brain disease, had surgery so she wouldn't be paralyzed, and will live with this disease and its symptoms forever. So what, accept it and move on. Except that she has lung function tests in two weeks that will tell us that she still can't breathe. Which I already know because I hear her after any kind of activity, I hear her when she sleeps, I see her chest moving shallow and rapidly as she sits on the couch doing nothing. And once those lung functions tell us what I already know, then we will still have questions about why she can't breathe. Is it from the Chiari? And if so, is it slowly improving? Will it? When? Is the syrinx in her spinal column causing it? It the syrinx decreasing any? We know as of last MRI that it wasn't, but it had not increased in size either. Will the syrinx decrease like it should? And if so, when? And will that improve breathing? Or is the breathing from her scoliosis? And the Restrictive Lung Disease? And will she need spinal fusion in the very near future to fix this? And when will that be? Another major surgery, with a long and difficult recovery. Will spinal fusion fix it? Will she ever breathe normally again? Is the lack of oxygen hurting her in any way? Can we fix all of this before she gets the flu which sends her spiraling down when her lungs are normal? Is she going to end up on a BiPap? A ventilator? And if so, how soon? Will she ever scuba again, her newfound passion? (this last one is a question we're pretending isn't even a question...we're assuming she will in good time...so assume with us)

And how does one plan life without these answers? Will she be able to go on her DC field trip in March? Will she be able to go on a spring break cruise if I give in to that request? Will she be able to go to Katie's graduation in May? Will she be able to vacation this summer? Will she be able to start high school in the fall with no issues? I'm a planner. And although I can roll with life's punches, I also need to have a little control. I have none.

The weight of the world is on my chest. Again. Add in that at some point in the near future I'm going to have to decide when my furbaby's dementia outweighs her happiness, and the weight gets heavier. And no matter what I try to choose, happiness eludes me. And I don't like to be unhappy. It isn't me, I don't feel right. But I don't know how to fix it either. I don't know where my happiness is hiding...it is the world's best hide-and-seek player. I don't know when it will decide to reveal itself. And I don't know how to adjust to the unhappiness. 

And I know I'm being selfish. Because if I feel like this, how do you think she feels? Her weight is just as heavy (and we know she needs no extra weight on her chest!). And she doesn't feel like herself, she doesn't feel right. 

So we live day by day. And as much as we would love to take everyone's advice and not dwell on the unknowns, that just isn't an option at this point. Because the unknown is not just about finding happiness. It is her life.