Everyone has a moment, a day, a year that they look back on and think “What the hell happened?” There is before that moment and after that moment when life changed somehow. I’d love to say it’s always good change like the birth of a child, a new marriage, landing your dream job or buying your dream home. The reality is that more often than not, we base those before and afters on traumatic events. The ones that break us and leave us to rebuild.
Obviously, having a child born with cancer is one of those life altering events. It’s hard to remember what life was like before Tristan. Of course we were so young at the time; we really hadn’t gotten the chance to live life yet. Our before cancer moment is our childhood. Our teen years. Our very first steps into adulthood. There weren’t many real life experiences yet. Our after cancer has been twenty years of being pushed to the brink of what you think your heart and soul can take and then being pulled away from the ledge just when you think you’ve had enough. It has been really high highs and really low lows. It has been intense pain and immense joy all wrapped into one. Some days I don’t know which way is up because the roller coaster of emotions is too much to keep up with. The only thing I felt secure in was that we had to have filled our quota of before and after moments. There was no way we could have more than our before and after pediatric cancer diagnosis moment. That wouldn’t be fair!
Unfortunately, life isn’t fair……….2017 came in and threw a sucker punch I never saw coming. I guess that’s why it’s called a sucker punch! I’ve always expected Tristan to be loving, yet difficult. To be outgoing, yet stuck in his own world. To be kind, yet self absorbed. To be oblivious to what others think, yet self conscious about being different. These are all part of the cancer aftermath and autism. I know them well. We’re on a first name basis. We’ve been friends for twenty years. What I never expected was to see Noah change right before my eyes. Noah who has always been our comic relief, no longer laughed. The one who always made smart ass jokes, no longer talked. The child who always had a ton of friends, was suddenly isolated and alone. The child who always felt everyone else’s pain suddenly seemed like his own pain was more than he could handle. These things happened slowly over time until all of a sudden the rug was pulled out from under us and we didn’t recognize our son anymore.
I’ve battled depression, anxiety, and OCD but those were my demons. They were also Tristan’s. But not Noah’s; never Noah’s! Coming to terms with the fact that not one, but both of your children suffer with that darkness and pain is enough to drive you right back under the blankets. I can’t tell you how many nights I laid in bed with my mind spinning. Going over everything that lead us here. What could we have done different? How could we have helped sooner? Instead of allowing him to make his own mistakes, should we have put our foot down? How was this going to get better? Would he ever be himself again? I grieved every single day and every single night because seeing the shell of my son felt like losing him over and over. And each night while I stared at the ceiling trying desperately to get oxygen into my lungs, my heart broke because I knew in the next room he was doing the same thing.
Here’s what I realized: I’d fought for Tristan without a second thought. He had cancer, but we fought it together. Every day I had to get out of bed, give him medications, take him to doctors, participate in his therapies, learn everything I could, fight insurance companies and on and on. I had to put one foot in front of the other whether I wanted to or not because I’m his mom! That is what I was put here to do. Noah is no different. It didn’t matter how heartbroken I was seeing him in so much pain and despair. I had to wake up every morning, put my feet on the floor and face the day with strength because I had to be strong enough for both of us. That meant taking care of me! WHAT? A mom taking care of herself?? Insert loud gasp! What a unique concept!
I realized fairly quickly that if I was falling apart I’d never be able to help him put his pieces back together. That meant working on me every single day so I didn’t get sucked down the black hole too! I started reading, journaling, keeping a gratitude journal, listening to podcasts, talking to friends and Bryan to get my feelings out instead of letting them fester, surrounding myself with positive people and meditating. Let me tell you, meditating is not for the faint at heart! One of the scariest things a person with OCD, anxiety and depression can do is sit quietly with their thoughts! I’m pretty sure my mind is probably a pretty scary place without all the quirks, but add them in and it’s like listening to multiple personalities argue! The meditation was probably the hardest of all because I had to learn to accept my thoughts, let them be and how to move on without dwelling. I had to learn how to quiet those voices and just be. I’m two months in now and still learning. Some days are better than others, but the results have been amazing.
In the meantime, Noah is getting better every day. Everyone working with us is optimistic about his progress and what lies ahead. Each day we see more of the old Noah come back. However, we realize the new Noah is also part of him now. Even if we can quiet the dark side, it will always be there lurking in the background just like it is for me and Tristan. That’s part of the legacy these moments leave. Before cancer we were naive. We felt invincible. After cancer we know bad things happen to good people. We know some things just happen. We always live with the fear of a relapse no matter how much time has passed. Before depression we were naive. We felt Noah was untouchable. After depression we get nervous if he has a lazy day and wants to sleep. We get paranoid if he seems quiet. When he doesn’t eat we don’t know if it’s because he’s just not hungry or because of nerves. After depression we are learning balance and how to decipher normal teen behaviors versus the black hole.
We just got back from vacation and as you can imagine, after the last few months it was much needed! While at the beach one day, I was watching Noah and his friend build a sand castle. You know the drill: build up the sand, try and dig a moat around it so the water goes around rather than through the castle, watch the tide rise, watch the waves destroy the castle, watch the tide recede, start to rebuild. It struck me that life is like building a sand castle. You have your before moment when the castle is perfect! Your towers are tall. Your flag waves in the breeze. Your moat is holding strong. Then the wave hits and you think it’s all destroyed. All your work was for nothing. Everything you built is gone. In those moments you have a choice. You can throw your shovel in the sand and walk away. Give up and wallow in despair. Or you can wait for that moment to pass and then rebuild. Sometimes you need reinforcements to help you get back on your feet or to build even better than before. Reinforcements like books, good friends, and meditation. The problem is we’re taught if we need help, if we use the reinforcements, it makes us weak. It means we failed somehow because we couldn’t do it on our own. Nothing could be farther from the truth. Especially for parents! You cannot give to everyone else when your bucket is empty!
I’m here to tell you to use the reinforcements when you need them! Love yourself enough to ask for help when you need it. Remember in these moments there are others watching and taking cues from you. Like your child who is suffering with the same demons as you! If he sees you asking for help, he’s more likely to do the same. If he sees you living under the covers, chances are he will pull the covers over his head too! We spend years teaching our kids they can come to us for anything. That we are always there for them. We know we’d give our lives for them if need be. However, we don’t model this behavior. What we teach them with our actions is that in order to be strong they have to stand alone. They have to fight every demon and take on every war on their own. That strength equates to holding in our pain, pushing it down, ignoring it, and going through the motions of life. One of the best things I did for Noah was taking care of me. Does that make me selfish? In some people’s eyes! Does that make me a bad mother? No! It means on an airplane, I’m going to put my oxygen mask on first so I can make sure I’m alive and well to save my son’s life too!