Calling Out From Planet Cancer

     Since I have not been very faithful to my little blog, I feel I owe some background to this new chapter in my life.  2016-17 was very difficult, as my sweet girl who was ten years old passed away from a terrible cancer called DIPG this past Halloween 2017.   One day maybe I will map it all out for you, but for now, the journey in its concentrated form is a little too much for me.  Today I have opted to take an indirect route and give my thoughts on situations only cancer families know. 

     When my little one passed away, I joined groups on Facebook to help me deal with my very lonely new role.  Facebook can be such a drain in so many ways, but it also can be a positive release through connection, especially when one's "tribe" of fellow sufferers may be few and far between.  Lately, there seem to be more and more mothers speaking out that their family and friends have abandoned them since their child was diagnosed with cancer.  Such insensitive comments are reported--things I can't believe would come out of another person's mouth.  In most cases, these people are refusing to give up their ordinary everyday routine to help their daughters, sisters, sisters-in-law, or friends cope with having a child with cancer.  I have also witnessed in real life family members who turn a blind eye to the needs of the child.  I am beside myself with disbelief and heartbroken for those who have the added suffering of feeling abandoned and as if they have to shoulder all of the burden of the hardship of cancer alone.  We should never have to feel alone.

     Fortunately, our cancer journey was not quite so bleak.  One night, when my husband and I were hunkered down in our bed for the night, I looked at him with sudden realization and awe and said, "I don't think we lost any friends or family.  In fact, I think we gained some."  I don't mean to diminish others' journeys by rubbing our good fortune in their faces.  We both recognize our blessings in this regard, but we are familiar with the idea that the world of cancer is an alien world, one we had absolutely no choice but to assimilate to (for all of my Star Trek nerd friends).  Although we were so lucky to have such a crazy big network, I can't say we were completely immune to our feelings of "otherness" when my daughter was sick.  From issues regarding insensitivity with wheelchairs to stares at her balding after radiation, we definitely felt the strangeness of our planet and sometimes found ourselves thinking, "Why do I have to explain my daughter's situation?  She has cancer.  This should be a no-brainer."  I think I can say that my daughter did not necessarily lose any friends, but she did deal with kids who were not so nice, who were jealous of the attention she was getting.  Because she did not look sick for the majority of her illness, they claimed she did not really have cancer.  Because she did not look sick, many children and adults did not realize the severity of her condition even though my husband and I were pretty candid and regularly communicated her situation.  There were times when we might as well have been speaking a foreign language, and the frustration and the hurt was real. 

     Having had our own version of betrayal and insensitivity, my heart goes out to those who lost best friends, sisters, brothers, parents, husbands, and wives through their child's cancer journey.  Cancer does not just take our loved ones physically.  It has the potential to kill off relationships through the destructive weapon of fear.  All of those people who refuse to visit planet Cancer, do so out of pure fear, as if acknowledgement of its existence would infect them as well, and although cancer can't actually be caught like the flu, unfortunately they are right to be afraid, for the disease is ugly.  Its effects are heart-wrenchingly devastating, so to a certain degree, I understand others wanting to put their heads in the sand.  I wanted to put my head in the sand, but to do that meant leaving my child alone out in the cold, and there was no way I could do that.  I think this is where I had to accept the limitations of our humanity.  There are just those who cannot look past their fears, and unfortunately that means I either had to accept people for their limitations or simply let them go because in their stagnant environment, nothing grows.  Fortunately, the beautiful thing about the world is that for every person who can't seem to work past the fear, there is one who can.  For every stranger who would not help me navigate her wheelchair, there was one friend who would.  We also had to play our part, educate our audience, and let them know what we needed.  Because just like in a marriage, our friends and family could not read our minds.  Sometimes if a friend seemed distant and unsure--afraid of what we were facing--all it took was me reaching out and letting her know that she was wanted.  This cancer journey is hard for all parties involved, and it takes all of us doing our part to hold one another together.  Heck, life is hard in so many ways that it's crazy if we don't band together to help each other see this through.   

     So thank you, our amazingly brave friends who overcame the fear and stepped through the muck with us.  You are who we cling to.  You are our rock who keeps us grounded.  You are where our energies flow because you return that love tenfold.  And for those who are in the muck right now, those courageous people really are out there.  They pop up in the most unexpected places and  sometimes all you have to do is stretch out your hand.