The Word That Stole My Words.. Life with Pediatric Cancer

4th of July, Hospital Parking Garage

4th of July, Hospital Parking Garage

My passion, my love, my life is words.  Learning and growing through the written word.  Working daily using spoken word.  Communicating to and with my spouse logistically, collaboratively and lovingly through words. Feeding into my kids constantly-words of affirmation, words of discipline, words of (hopefully) wisdom, words of compassion and words of love (and of course humor).

Words are what I, as a therapist, use on the daily to work, to comprehend, to teach, to heal, to process, to make sense of the world. Words…. mostly sarcasm and humor are how I survive…. Words are truly what make me feel alive, where I can go and feel… imagine, create and experience things wholely.  As a professional I use words all day, the whole “talk therapy” thing.  I have the chair, you take the  couch, we talk. 

Last year… I quit writing.  I had no words.  Professionally-no blogs, no emails.  Personally no return text or calls, I had no nothing.  Not a single word to spare.  

The side of humans that we all too often don’t want others to see is the human side.  The side where things are not easy, freaking messy, and at times what seems too impossible to shoulder.  Vulnerability.  Its a bitch.   Early last year my son started having fevers and symptoms that were peculiar- bloody noses here and there.  Random fevers.  No big deal… Until it was.

Now as an “adoptive mom” I am well versed in being a “trauma mama”.  I have read all of the books, attended all the conferences….  seen all the therapists.. But I have yet to find an experience in life that had taken my words.  Until I became the mom whose son has been diagnosed with cancer.  Stage 3… Now I am a “trauma mamma” and one of the moms on the oncology floor of the children’s hospital pacing the halls (or often walking in place in your room)  begging for their child’s life. There are really no words.

As you might be able to tell (and now that I am pointing it out to you, you will notice)  I don’t have eloquent words back.  I have choppy, short sentenced thoughts that may or may not flow.       Far more sarcasm (which I didn’t know was possible) and far more cursing, (which I am sure my momma hates).  When cancer, another diagnosis, trauma or loss touches your life, you will never be the same. Your life is changed. You will change in good, healthy ways, and in ways that don’t feel so good.  No matter if it is you, or your child, your parent, friend, co-worker or nemesis, or simply story your read on social media.. you are impacted.   Cancer, trauma, death…. it changes your life. 

Now…. being a parent of a child with a cancer diagnosis,  I (we) had to figure out a whole new life.  Life in the hospital, life with an access port surgically inserted into my son’s chest, life where no one really knows whats words to say to you, nor do you know what to say back.

People simply look at you different (understandably). I didn’t know how to view myself anymore.  How could others… ?  You get amazing food delivered, people show up, they disappear, they surprise you in good ways… and  bad.  You are encouraged by humanity,  and you are scared.  You feel loved and you feel betrayed.. you barely have time to think… you just do.. You feel weak and you feel strong.  And you (to quote Nike)… Just Do It. 

Now, as a parent of a child with cancer you not only learn more about humanity, but you see (in our case following adoption you see again) the resilience of your children, the brilliance and humanness of doctors, that you can endure more than you think you can.. until you order French fries for dinner and they arrive cold  … then you cry your eyes out because you just can’t handle anymore.  

Both our son with cancer, and our healthy children's lives changed forever.  Our entire familial vocabulary has changed.  We had/have “clinic days” and “hospital weeks”, “scanxiety” (anxiety around the results on scan days), words to gauge pain, and words to show we were scared, words my healthy kids had to find to show they needed additional attention, and words to show we, as a cancer family, needed help (often the hardest of all).  

Then the word came… the most beautiful word of all.. remission.  Oh sweet remission.  We celebrated, we took a deep breath, and then we learned what remission really means…. Remission is a word I have come to realize means, cancer is gone (for now)… but treatment continues.   More ER trips than during active cancer, more chemo… its still not over, hurts because of the permanent effect that cancer has had on my son’s precious little body.  Remission was a word I once thought meant “in the clear” and I now realize means “the next step in recovery”.  

My words are starting to come back. My PTSD is real.  My son is physically “healthy” (chemo freaking reeks havoc on your body). His PTSD is real.  Words will allow us to continue to heal emotionally, and guide his physicians with his physical health.  We try to use words of gratitude for those that carried us through, although just as with diagnosis, there are really no words to express gratitude to those who keep your family afloat when you feel like you are going to drown.  

And now… My words more intentional, more jaded, gracefully jumbled….  although jumbled flow without reservation, less concern on if I am saying the “right thing” or with care on what others think.  There is more thanking others for understanding nuances versus apologies for being who I am.  

“I kicked cancer’s butt” -Tris Sokolowski, words from my bad ass 6 year old

If you are a cancer parent…you are strong.. you can do this…. cry over the cold mozzarella sticks… use your words even if they are jumbled

If you know someone with cancer.. you are strong, use your words… even if they are jumbled

If you have cancer (or whatever you may be dealing with)… you are strong… use your words… even if they are jumbled.  

If you have any trauma, PTSD, depression, anxiety (scanxiety), fear, stress… use your words.  Reach out and let us help, we can all work towards healing and health together.