Let me set the scene: I currently live somewhere between gratitude and sheer anxiety and terror. My to-do list is light years long and it is completely trumped by my fear over what may or may not happen to my children. I mean, can you blame me? Within a year, my daughter has spent more time in the hospital than my entire family combined ever has.
We have a scan this Friday, but of course, it is not an in and out scan. It is a PET Scan that includes a type of nuclear medicine to help us see how active the remaining neuroblastoma cells are. I received a call yesterday from the Nuclear Medicine Tech asking if Marjorie started her drops. Um, what drops? No one told me about starting her drops that protect her thyroid from the scan. Because, like every scan, there is radiation and a risk. Awesome.
Enter: panic. I immediately reach out to our stellar Oncology nurse, Jess, who quickly calls in the drops and says it is totally fine. The drops won’t be ready until 5pm today so I just have to accept this. Jess and our oncology team says it is perfectly fine to start later today. But it is hard for a momma bear to say it’s fine when I don’t want my daughter doing the scan in the first place.
My mind jumps straight to all of the possibilities down the road. Cancer treatment comes with a hefty price tag: chemo can cause more cancer, chemo can cause heart issues, hearing issues, etc. and of course scan radiation can cause cancer. Cancer alone is enough to torture the mind of any parent, but the treatment of it all is simply brutal.
I am dwelling in a place of such anger. Anger that we have to deal with this. Anger I did not get the drops in time. Anger that my baby has to be sedated, again. But bottom line: anger that this has even happened in the first place. Cancer sucks. And I am so damn mad that we now own the label of pediatric cancer. And no, saying ‘survivor’ after it does not make me feel better. I did not want this label to begin with.
So as I sit in my anger, going back to therapy 101 ‘Feel your feelings,’ that foggy cloud of guilt comes rolling in.
I should be counting my blessings we only endured two rounds of chemo and that we are under observation now. Millions of others (many of whom I see daily on Facebook) endure round after round and unimaginable side effects. And the biggest: so many parents have lost their children to this dreadful disease.
But I know better, I can’t hang in this place of guilt. I know that the mom whose daughter died of cancer and the mom whose son is going through round after round would sit with me in this place of anger and tell me not to feel guilty. Just as I sit with my friends and tell them that their child’s scraped knee deserves as much compassion as Marjorie. I basically revert back to my own blog: Compassionate Pizza. Just because I write about something does not mean I practice it perfectly. This is all a crazy balancing act of practice.
The guilt is simply trying to overshadow the anger and I know I have every right to be angry. The problem is, when do I have the time to feel the feelings? We are building a house and it is almost finished. Instead of enjoying these last few weeks putting the finishing touches on it, I am covered in anxiety over how to fit it in. My MacBook Pro is on its last leg, making my ability to catch up on work (aka my passion and joy) impossible. My son is out of school until next Thursday and Marjorie has four appointments (including the scan) between now and then. And of course there is also the glorious chore of packing the house for our move in a few weeks.
So amidst my day to day chaos, the hole in my heart does not seem to be adhering to my to do list. This journey, this pediatric cancer whirlwind, has put a massive dent in my soul and I can’t seem to repair it. I know time will heal it, but all I want is to find a little bit of time for me to ache. To sit and hurt and cry. I know that sounds strange, but sadly I know that is the only thing that will repair my spirit. It is so frustrating when you know the solution, but you can’t make it work.
I love my children with every fiber in my body. I want nothing more in life than to watch them grow up and discover who they are. I want them to be happy. I want them to find love and chase their dreams. I want them to know that no matter where life takes them, I will always and forever be their momma and will always love them. That is my only wish in life and in this moment, all I feel is terror for my children.
My son had a scrap on his knee a few weeks ago, and my mind immediately jumped to staph infection. I then had visions of the PICU. Brene Brown, my bestie/dinner date, calls this Foreboding Joy. Joy is a terrifying emotion to feel when you know first hand what it feels like to have it ripped from under you. I am so thankful to Brene’s work that helps me identify my fear so that I can process through it. Of course, I haven’t processed through it yet, but when I do you all will be the first to know.
I feel like I am living in the ultimate Foreboding Joy challenge. Ask any pediatric cancer mom? Hell, ask any mom! When you’ve seen your precious baby endure so much in less than a year, all I want is to cover both of my children in a bubble wrap and never let them go. But I can’t. I won’t. We live on. I recognize when that fear creeps in. I acknowledge it and remind myself that just because Marjorie got cancer does not mean she is going anywhere. As always, easier said than done.
The night we received Marjorie’s cancer diagnosis, I rocked her to sleep and whispered in her ear:
“No, you don’t baby girl. You hear me? Momma is building you a new house with a pretty pink room. You will go to dance recitals and camp Green Cove. You will go to college and chase your dreams. And, Marjorie, your daddy will walk you down that aisle.”
Tell me how do you not play that moment on repeat in your mind. Every scan and appointment sends my anxiety and fear into a tailspin, which leaks out as anger and to do list angst. I forebode joy like it’s my job. Like I said, I don’t have the answers yet of how to trek through this muck. I don’t think I will ever have a specific answer other than ‘just keep swimming’ – and just keep living, thriving and seeking joy. I’ve discovered life is not really about finding the answers; rather it is about being aware of your emotions and actions, examining them, processing them and learning from them to move forward. Ultimately, living your life in a more effective and fulfilling way.
I refuse to raise my children in a foreboding joy house of survival. We will live and thrive. We will dance in our new kitchen just because we feel like it. We will read stories and build forts with boxes. We will play dress up in our new closet. My family will not forebode the joy that it is in front of us. I will not forebode it. Never have, never will.