As a Mother

I don’t know if I can accurately articulate the pain I felt as a mother watching Levi go through his battle with cancer. Something happens when you hold your 20-year old son in the shower and bathe him because he’s too weak to stand.  His body like a skeleton.  Scars everywhere.  The future uncertain.  It is a deep and profound wound.  Something as simple as seeing him walking around the house shirtless- revealing the scars on his body were like a visual accost to me.  Throughout, I felt helpless, powerless, scared, angry, disillusioned, and did I mention angry?  All I wanted to do was take it from him.  I would’ve taken his place in a second.  When we had the scare that the cancer may have returned, I was screaming inside my head- just let him alone! If someone has to get cancer, give it to me!  I can take it!  I repeated this over and over.
 
During that year in Pittsburgh, I had a room across the street at The Family House, but I mostly stayed in Levi’s private room and slept on the chair beside his bed.  He didn’t want to be alone and I didn’t want to leave him.  He had a private bath and a shower so I never really needed to leave.  During one of his surgeries I had been in the room for 3 days straight.  I remember finally going outside just to breathe some fresh air.  Levi had fallen asleep so I thought I could sneak out for a couple minutes unnoticed.  I walked outside and took a deep breath.  The sun felt good on my face.  It was a beautiful spring day, so I thought I would take a short walk and hurry back before he woke up.  The walk automatically turned into a run and I ended up running for hours through the cemetery, the strip district, Lawrenceville, Carnegie Melon, and all around Shadyside.  I literally couldn’t stop running. 
 
If you’ve never spent time in a cancer center or the oncology floor of a hospital, it’s very overwhelming.  There are so many sick people, sick children.  Your heart physically aches for them.  Spending so much time there, I felt like there was nothing but sickness everywhere and we couldn’t get away from it.  Even still, when we go for check-ups, I return home exhausted just from the emotional stress of it.  You are there for most of the day and not only do you not know the outcome of the testing for your child, but you also never know what you’re going to encounter.  During one of our visits to Hillman, we were sitting in the radiology waiting room waiting for Levi’s CT scan and there was a gentleman slightly older than me sitting near us.  He was alone and on the phone with a family member.  He was explaining that he had received bad news and his cancer had returned.  He was visibly distraught and I felt horrible for him.  I was instantly sick in my stomach.  He finished his phone call and just sat there looking down.  I didn’t know what to do.  I wanted to comfort him but I didn’t want to overstep.  I couldn’t take it so I just went over and sat beside him and grabbed his hand.  I didn’t say a word.  He just looked at me and smiled and said, “Thank you.”  I was so grateful for Levi’s good report that day, but could not forget that man.  I still wonder how he is doing. 

We were lucky and had finally received the news we had hoped and prayed for- “There is no evidence of cancer in your body at this time.”  Oncologists never use the term “cancer free” like I hear so many people say.   Levi was finally out of the woods, finished with chemo, and could finally get back to his normal life and return to school.  He lived at home for his sophomore and junior year because I wanted to make sure he was eating properly, taking his meds, and strengthening his immune system.  And, honestly, I just needed him home.
 
At first, things seemed fine.  Aside from the daily shots, things were relatively normal and we settled into our routine.  After a few weeks, I felt my shoulders finally start to soften.  Then one day, out of the blue, I crashed.  I don’t know how else to explain it other than to say I spiraled into a very deep place.  I couldn’t make sense of it and tried to ignore it as best I could.  It wasn’t sadness, I simply felt hollow and exhausted and didn’t want to get out of bed.  I didn’t cry, I just felt nothing.  I took joy in nothing and didn’t eat for days at a time.  I didn’t want to do anything, or go anywhere, but I carried on and told no one.  I couldn’t.   Why bother mentioning it?  Who would understand anyway?   I knew from past experience that it would be seen as weakness and I didn’t want to hear it.   So, I put on a happy face and put one foot in front of the other.  I especially didn’t want Levi to think that something was wrong.  This went on for weeks and I couldn’t figure out what was going on.  I just kept thinking- what is wrong with me?!  I’m supposed to be happy. We survived this, and Levi is better.   I should be elated.  But I felt awful.  Then couple that with incredible guilt and shame for feeling awful…  This cycle went on for a couple months.  My mother was the only one who finally noticed that something was wrong.  Worried, she called my elder sister and said, “Come get your sister and get her out of town.  Just take her somewhere!  She’s going to refuse but make her go!”  Wendy called me and said coolly, “Hey, let’s go to Ithaca!”  “Uh, no,” I said.  “I don’t feel like it.”  She said,  “Oh come on, it will be fun.”  It wasn’t.  The Finger Lakes region is one of my favorite places to visit, and I love the farmer’s market in Ithaca- it’s amazing!  But nothing was right and I just wanted to go home. 

One evening, out of desperation for answers, I did a Google search.  I didn’t even know what to type in, so I just kept trying different combinations of words.  After about an hour, I came across an article about being exposed to long periods of stress and what that does to the body.  Basically the article said when there is perceived danger or a threat of some sort (e.g. your son has cancer), you automatically shift into survival mode.  Something takes over.  You don your armor and you stand on the front lines, ready for battle.  You run on adrenaline and your only goal is to remove the impending danger.  Then when the danger is removed, the armor comes off and you crash.  The extent of the crash being commensurate with the extent of time, and the degree to which, the person was in battle mode.  This was making total sense to me.  Finally something was making sense!  I kept reading about parents of children with cancer and the toll that it takes.  That cancer does not just happen to children, it happens to families.  How everything changes and the threat of cancer always feels like it’s hanging over your head.  Like an albatross.  Everything about our reality had changed.  I simply didn’t know how to operate as this new person.  I wasn’t sure how to navigate the murky waters of that.  I was questioning everything.  Every belief I ever had.  What this new reality was going to mean for Levi and his future.  How would he ever find a woman who wouldn’t be scared of his past?  And how Levi would deal with the changes in his body and certain other things that I can’t share out of respect for his privacy.  As a parent, these are the things that go through your head.  I never considered that post-traumatic stress could be related to the stress of cancer.  I had always associated it with war, or violent crime.  I didn’t know that 45% of mothers experience some degree of post-traumatic stress after their child is diagnosed.  Sometimes not revealing itself until years later.  For more information on post-traumatic stress for parents of children with cancer, please see here:  http://www.uwhealth.org/news/post-traumatic-stress-disorder-in-parents-of-children-with-cancer/12374
 
My sister suggested that I join a support group or talk to someone.  I’m not a group person and I didn’t know anyone who had a child with cancer.  And I really didn’t want to talk about it anyway.  I needed some “normalcy” (never again will I take an ordinary day for granted) and just wanted it to go away.  But like all things you try to suppress, it resurfaced.  Just knowing what was wrong helped tremendously.  Reading about the experience of other parents of children with cancer and post-traumatic stress in general helped.  You can’t fix what you don’t know is broken.  I also learned to allow things to run their course.  I did yoga.  Slept.  Ate well.  Ran.  Painted.  Worked.  At one point I had 4 jobs.  Working ridiculous hours just trying to get myself back to normal.  Some people may not understand that approach, but it worked for me.   It was the only way I knew how to heal myself.  I knew that when you were hurting or needed something yourself, the best thing to do was to give and to help someone else.  To get your eyes off yourself.  So I just kept doing that until I felt better.  The more I helped other people, the better I felt.  I also created boundaries and learned how to protect myself from toxic people who would insert unnecessary stress and drama into my life.  Being very careful with whom I spent my time.  Immediately removing anyone who drained my energy,  or was negative and dramatic.  Life is hard enough without being around people who insist on making mountains out of molehills.  My tolerance for that is ZERO.  Ain’t no one got time for that.
 
Shortly after this, I had a conversation with a very wise soul and she told me that in order to move forward, I needed to mourn.  Mourn for my previous self.  My previous life.  Our previous reality.  My trust in my son’s health.  Mourn for our previous innocence.  For my dreams for him and his changed reality.   For the things that were stolen from him.  Mourn for the person he was.  And what was lost.  She told me that I am a changed person forever and that I can never go back, so the only way to move forward is to mourn for what was.  She warned that not everyone would understand this, nor did they need to.  And that I needed to recognize that cancer had changed everything but that I should also refuse to identify with it.  Recognizing that it is part of the story, but doesn’t determine my story.  I had to chew on that for a really long time to get what she was saying.  I wasn’t exactly sure how to go about doing that, but I knew she was right and that I would figure it out.
 
I can’t make sense of why bad things happen.  Why good people suffer.  But, I believe that God takes things that are meant for our harm and uses them for good.  He takes the pain and gives it a purpose. 

Page Five.
-K