37%

Put yourself back in high school algebra class. You just took a test and are about to get your grade. There was no extra credit, so you know the highest possible grade is 100%. You sit there anxiously waiting for your test to be handed back to you. Mr. Hendershott (those from my hometown will appreciate this reference) stops in front of your desk and hands it back to you and you see in big red numbers at the top...37%. Your heart sinks. Your stomach knots. You felt that you did okay on it, that it wasn't that hard to get through. But you didn't even get half of the questions correct. You didn't even get a "high" F, not even close to passing with a D. Thirty-seven percent.

Now, remove yourself from Mr. Hendershott's class (I know friends, we all hated to see that class end) and place yourself in a doctor's office. And that 37% that is being thrown your way describes your child's lung function. You know, those two organs that are needed to keep you alive, the ones that breathe for you? Let's think that if each work at 50% to give you 100% lung function, she doesn't even have the equivalent of one working lung.

You are sitting in that doctor's office, listening to this. But you have hope. Because this low lung function could be a result of Chiari Malformation. So your child undergoes urgent brain surgery. Three months later, you are given the same number. So surgery for Chiari didn't help improve it any. But you have hope. Because this low lung function could be the result of scoliosis (which most likely worsened due to Chiari). So your child undergoes urgent spinal fusion.

And four months later, you are given the same number. And the hope is gone. You are told to be thankful that it has remained stable and not decreased any further. You are told that your new hope is that the spinal fusion was enough to stabilize the lung function for years to come. You are told that 37% is your new normal, a normal that you need to pray with all your might does not slip any further.

Your heart sinks. Your stomach knots.

For the last two weeks, since hearing the new normal, I've been trying to put myself into Kennedy's shoes. Lord knows I'm out of shape and get out of breath easily. But my lungs fully function. They didn't always though and I remember how tired I was when my asthma would flare. How much I hated that feeling of not breathing fully and completely. How often I just wanted to do nothing because my energy was drained. And I think about her with only 37% lung function. And Chiari on top of this. And recovering from 3 major surgeries in the last 9 months and an ongoing infection. I don't know how she does the stuff she does. I don't know how she functions. I honestly don't know.

And I'm learning how to function as the mom of a child with 37% lung function. How to decipher lazy vs. warn out. How to notice when she's struggling, when she's pushing too much. How to push her but not over-push her. How to let her learn this new normal on her own terms. How to help her come to terms with being tired, a lot. How to help her not to focus on what could be in the future. And I'm not gonna lie...it isn't easy. Every parent will say that one of the things they hate the most is seeing their child sick or struggling, and not being able to do anything about it. This is my everyday. But my lungs fully function, so I have the good end of it.

The saving grace to all of this is that exercise does not decrease lung function, it does not damage the lungs. So we're one step closer to getting her back to scuba diving, where we're pretty sure she is breathing better than she does on land.

We don't know what the future will bring. A 3D surgery to help expand her rib cage? An oxygen machine? A vent? A shorter life span? Absolutely nothing more than what we're doing now? No one knows. Only time will tell. And until then, we will not dwell on it. Well, maybe I will just a little. Because I'm the mom and that's my job. That and praying and hoping that 37% always stays 37%.