What I Wish I Knew Before my Son was Diagnosed with Cancer

Another mom who I've met through this journey is doing a year long feature on her blog titled "What I wish I knew Before my ________ was Diagnosed with Cancer."  I was thankful for the opportunity to share what I wish I knew before Matthew was diagnosed.

 

My only son Matthew was diagnosed on September 7, 2012 with DIPG, an incurable, inoperable form of brain cancer.  He was 10 days shy of turning 10 when he was diagnosed.  He battled bravely for 14 months and passed away in my arms on November 5, 2013. 

Although there is nothing I can do to change the events that have taken place, there are several things I wish I knew before Matthew was diagnosed. 

I wish I knew how much our family was loved:  Before Matthew’s diagnosis, I knew that my family was liked.  We have a wonderful circle of friends and we live in a great community.  However, I could not comprehend how much we are LOVED until Matthew was diagnosed.  The generosity that we have received is beyond anything that I ever could have imagined.  It’s overwhelming, incomprehensible, humbling, and quite simply amazing.  Two months after his death, we are still reminded daily how much we are truly loved. 

I wish I knew what this diagnosis would do to my relationships:  In my naïve mind, I thought something as major as your child being diagnosed with terminal cancer would somehow create a clean slate with the relationships in my life.  Previous issues would be erased and everything would start over fresh.  Everyone would realize as much as I had what really matters in life.  I was sadly naïve in this area.  Some relationships have been made stronger than ever.  My husband and I are closer than I ever thought we could be.  My friends and close family members have rallied around me and supported me in ways that I never even realized I needed.  They were my strength for 14 months and continue to be.  I’ve also learned that if the death of my son isn’t reason enough for some people to forgive, forget and move on, then I don’t know that is.  This journey has told me everything I need to know about the relationships I have with the people in my life.

I wish I knew not to take simple moments of life with my children for granted:  Of course I’ve loved my children since the day they were born.  But like any mother, I got frustrated, yelled when I shouldn’t have, probably said “no” more than I needed to and took for granted the time we had together.  Hearing the words “no cure, maybe a year if we’re lucky….” immediately changed that.  There is nothing like knowing your son is living on borrowed time to make you cherish every single moment together.  Someone once said “it’s like living life in High Definition.”  Every sunny day is more beautiful, every laugh is more musical, and every achievement is more remarkable.  I savored every breath he took, every word he spoke, every squeeze of his hand in mine as we’d walk, his smell, his voice, his everything.  It’s sad that it took an experience like this to make me realize how to cherish the everyday little moments I have with my children, but I’m grateful that I’ve at least learned to live in HD. 

I wish I knew that karma is as make believe as unicorns:  I’ve had a good life.  Yes, I’ve had challenges, but I believe that these experiences have made me stronger and made me who I am.  I assumed that because we are good people who live a good life that the universe, God, Buddha, whoever, will take care of us.  I was wrong.  Bad things do indeed happen to really good people.  The theory of Karma- if one sows goodness, one will reap goodness- was blown apart the day Matthew was diagnosed.  What could my 9 year old son have done to deserve a cancer diagnosis?  What could we, his parents have done that was so awful to deserve this?  Is this a lesson?  Is God trying to teach us something?  These are answers I don’t have and don’t know that I ever will.  But I do know that the unthinkable CAN happen to us.  But the idea that karma is somehow at work- I’ll never believe that theory again.   

Each Journey is Unique:  The day that Matthew was diagnosed, a neurosurgeon at Seattle Children’s told us “It’s important to remember that Matthew’s tumor is unique.  No one knows how it will behave, so don’t think that the statistics will dictate his journey.”  I wish I had known that just as Matthew’s journey was unique; my grief journey will be unique as well.  It’s a wonderful thing to be connected with amazing moms who have lost a child as well, but when you start comparing your journey to others, that can be harmful.  There have been times that I’ve felt that I’m not “sad enough” if I have a good day.  Deep down, I know that I love my son more than life itself and the amount of tears that I cry are not a measure of that love.  I’ve had to learn that I will grieve however I need to grieve and it will happen when I need it to happen.  Comparing myself to others only serves to make me feel that I’m not “doing it right.”   Had I known this early on, I think I would have saved myself a decent amount of guilt.

I wish I knew how strong I really am:  There have been too many moments to count that I’ve cried “I can’t do this….I don’t know how I’ll survive.”  Guess what, I’m doing it.  I’m surviving.  I took care of our son for 14 months better than any other person could have.  I comforted him when he was sick, scared, and in pain.  I kissed him goodbye every day for 6 weeks as he went into his radiation treatments and told him how brave he was.  I watched as poison dripped into his veins and told him how proud we were of him.  I told him about Heaven and Jesus and eternal life and eased his fears about death and leaving his mommy, daddy and sister behind.  And I held him in my arms and comforted him as he took his last breaths while telling him that it was ok, it was time for him to go.  So yes, I am strong.  I am so much stronger than I ever even imagined.  Fear will never hold me back.  If I am strong enough to live through these past 16 months, I am strong enough for anything.

As I read through this, I’m left wondering “What if I knew all these things before Matthew was diagnosed with cancer?  What would I have learned?”   I guess this is how it was meant to be.  Although it would have been helpful to know these things 16 months ago, these were the lessons I was meant to learn.

With Matthew in my Heart, Nikki