Tornadoes

I am in what my kids call “fancy clothes” tonight. LBD and heals and feeling pretty on top of the world. I get to hang out with my husband who looks super hot tonight and in an hour I will meet a famous flower designer. It is going to be a great night. Little do I know that in 4 hours I will be slumped on the bathroom floor, mascara all over my face, surrounded by tissues and my fragmented family. I will be left wondering where to start cleaning up first. A tornado is going to hit my house and I don’t even know it is coming.

Growing up they teach you there are 4 seasons. But what if you have more than 4 seasons? Some have mud, stick, wildfire, monsoon, wildflower or hurricane season. We have tornado season where I live and it is not fun. Anybody want to trade? I will take another winter or even stick season. If you know what tornado season is, I am sorry. You know all too well the late night alarms that go off to alert you to check the weather; put shoes, helmets and essentials in the hallway bathroom just in case; telling your kids “it’s just a thunderstorm” because they still have trauma from the last one that ripped through your city. The fear of waiting and watching the radar to see if and when a tornado will form over your house sucks. Tornado season is only a few months long and although it is terrifying, it eventually ends and you can breathe again and not freak out when the temperature suddenly drops or a storm comes out of nowhere.  But what if the season doesn’t end?

Four years ago my son started taking a miracle drug called Trikafta.  It is a CFTR modulator and it “fixes” some of the problems with CF. Let me first say that I am SO thankful for this medication, for the people that created it and that it works with his genetic mutation. I don’t take that lightly. Physically, he is healthier.  He is able to clear colds now without antibiotics; misses way less school; seems to have more energy; has gained weight and has a 4-pack for the first time in his life.  All of those things are HUGE and have made his life better physically…but there has been a super cell following him around since the second week he took the first pill and we cannot get rid of it.

Although they wouldn’t admit this until recently, Trikafta can have pretty nasty side effects for some people.  In young kids it can cause rage and impulse control. In older kids/adults it can cause anxiety and depression. My son is experiencing the first.

We have also since learned that he probably has medical trauma from his disease. He is a sweet, caring boy most of the time but can morph into an F3 in seconds.  We sometimes get “alerts” that a tornado is coming. If he has been sick, is exhausted or gets a certain look in his eyes, we all know to go put on our shoes and helmets and brace for the storm.  Sometimes there is no warning and we are all left scrambling to gather our stuff and run for the bathroom.  No-one in our family likes the storms. We each have our own trauma from it. For my son with CF, his is the worst.  I can see him in the middle of the whirling storm but no matter what I do, I can’t get to him. My feet are stuck to the ground. All I can do is helplessly watch, waiting for the storm to die out.

For years we kept being told it was “our parenting” so we kept trying to parent differently.  They said buy a punching bag, we are on our 3rd one; have outside time, we bought a trampoline and then a bigger trampoline; have quiet places, we have books and art supplies everywhere. While these things are helpful, it is not fixing the problem. What are we supposed to “try” now? Where do you begin when you are surrounded by the emotional rubble of your family?  Yeah, you can clean up and repair what is broken but it will never be the same again. How many times can I superglue a heart?

I have hesitated writing this post because I do not want anyone to think differently of my child. Most people only see the funny, caring kid who loves dance parties and making goofy faces and I am so grateful for that. They don’t see the little boy fighting a constant battle with Trikafta or the one lugging his medical trauma around like a backpacker on the Appalachian Trail. They don’t see the little boy losing his battle on a Wednesday night, rage shooting through his dilated eyes as he yells “I don’t know why I am so angry?”

“I am telling my body to calm down but it won’t listen” he whispers as he collapses into my arms shaking with tears rolling down his cheeks. It’s like The Hulk morphing back into Dr. Banner. I hold him tight and start to cry. How did we get here and how do I fix this? Yeah I can patch and repaint the walls but that isn’t fixing the problem. I tuck him in and head to my other boys rooms to assess the damage that was created over a missing toy. I am tired but I have to speak up. What is the point in doing this blog if I’m not going to be honest?

My husband says “sometimes there is no good answer. You have to pick the best of two bad options.”  Our “best” right now is to keep our son on Trikafta and for us to get better at managing the storms.  Choosing between your child’s mental and physical health is not a decision a parent should ever have to make.  We think we are making the best decision but we live life forward and understand it backward.   

I am at a spot right now in my life with a lot of questions, anger and grief.  As our family continues to evolve and weather these storms, I am caught with how to best protect them. Because that is what a parent does. We try to protect our kids at all costs. But how do I protect them from an F5 that could strike at any moment? I have no idea.  But, I am a mom that wants better for her son. He deserves it. My whole family does. So I do the only thing I can control. I get up; throw the tissues away; wash my face; change into sweatpants and find my laptop.  In the quiet darkness of my home, I will write this blog and hope that I am raising awareness with it. And hope that this awareness will one day lead to a cure. Like it or not, this is part of my family’s story, so I might as well write about it and hope it inspires someone to help write a different ending to CF.