Sunday, November 2, 2014

A Perpetually Broken Heart

Don't let the title deceive you - I am a very lucky woman with a very beautiful family and life filled with laughter and good memories. (Watch our video at the bottom!)

But yes, I have, and forever will have, a perpetually broken heart. Let me explain.

I have been reading all evening that Brittany Maynard, an advocate for Death With Dignity, has passed away. And I've realized yet again that growing up brings along with it a very large path shaded in gray where the answers in life are not so clear.

When we're growing up, we are taught that choices are black and white; all or nothing; right or wrong. We are taught to take the theories and lessons taught to us and keep to them, not questioning the reasoning behind it. Then we grow up and see that nothing in life is truly black or white, but instead an eternal shade of gray.

I don't know Brittany. I can't say that I even know how she felt, because I myself have never (thankfully) had brain cancer. But my mother did, and I was one of her main caretakers during her illness.

My mother was beautiful, inside and out. I loved her smile, loved her laugh. Within months, this monster in her brain had stolen those from her. From all of us. So many people have rushed to judge Brittany, saying her decision was cowardly and wrong. Even those of us so close to brain cancer have no right to judge her because we have not walked that path. I can say that I don't think she was cowardly at all. Mom had stage IV inoperable glioblastoma brain cancer, and it ravaged her pretty quickly.

May 2004, right before diagnosis

July 2004

December 2004, on my birthday


February 2005



Every brain cancer is different. It will affect each person differently, and no two stories will be exactly alike. She is absolutely right though, that with her exact diagnosis, the end did not look anything but bleak and terrifying for her. You can see from the pictures of my mom, everything changed for her. Physically and emotionally, she was slowly robbed of dignity a piece at a time.

I never knew what the end would hold for my mom. She and my dad tried to shield us from that truth, although I could have easily researched it. I chose not to. Partly because I didn't believe she would die, and partly because looking it up would make it seem real. I wasn't prepared for either. Prepared or not, my mother's last months were devastating to say the least.

We were surrounded by family and friends non-stop; that is the silver lining on the eternal rainstorm that is brain cancer. As each day passed and more obstacles presented themselves - inability to walk, loss of 99% of her speech, unable to use her right side, bedridden, seizures (the list goes on and on) - a new kind of awful presented itself. I don't know that she would have chosen what Brittany did, because my mom is the type to fight tooth and nail until the last breath, but I do know that if she had been shown a reel of her final days, she would have been beyond mortified at what we had to do to care for her. 

I know my mom, and I know that she would have absolutely hated being in that position and having us there to be an active part. She would not have wanted that. I know that faced with the same outlook and knowing what I know after having been there at her side, I wouldn't want those same memories for my children or my husband. And yet not being in that position, I don't know what choices I would make in regards to my care. No one does until the situation is their reality. Brittany's family will miss her more than any words can explain, just as they would if she died after a few more weeks or months. But their last memories with her are beautiful; time spent as a family and checking items off her bucket list. I wish those were the last memories I had with my mom.

I wish that I could describe it to those who are judging Brittany. I wish I could relay to them the reality of those last months, weeks and days. What caring for someone with this diagnosis is like, to even offer a glimpse of what it must be like for the person with cancer if this is what caregivers experience. I want to tell them what my last memories with my mom are like, and how I would pray that my husband and children NEVER have to experience what we did. I won't, because even detailing it would strip my mom of the little dignity she had left at the end and I cannot do that to her. Telling the world those details would remove the beauty of her fight, the good moments that we had with her. I won't do that to her. I never have, and never will. So trust me when I say that Brittany knew what was ahead for her and it was not pretty. It was so ugly that even almost ten years after mom died, I won't say out loud what daily caretaking involved out of respect.

My heart goes out to the Maynard family. Sitting here tonight, my eyes are filled with tears and I know that no choice is an easy choice when dealing with cancer. May she rest in peace.

I hope my mom was there to greet her, and that the family knows so many people are thinking of them now. I'm really missing my mom tonight, just as I do whenever the holidays roll around. And without her here, yes, I have a perpetually broken heart.

This was the video done on our experience when we did the 5K a few years ago.

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