GREY MATTER LIFE

It has taken some time to digest what has happened this past week. To say we are disgusted, horrified and shocked would be an understatement. Yet, in contrast we also find our spirits lifted by the countless messages of support, encouragement, shared disgust and pleas to pick our heads up and keep them high. We thank you.  

Aside from personally grieving, we’ve spent some time this week using our pain as a learning experience for our children. A lesson about the power of words and that purposefully hurting another benefits no one. 

Our journey as a family these past two and a half years has been filled with highs and lows.  As I have written numerous times about our journey with this piece of shit brain tumor, we’ve been forced to face my mortality, questions about how my quality of life would be affected and we’ve acknowledged that a new definition of “normal” would need to be created. We have redefined our lives, discovered our new normal, and we are celebrating stability. We are happy and we are content.  

Aside from death and taxes, there are no guarantees in life. Last time I checked the mirror I didn’t see an expiration date stamped on my forehead and I’d bet that you don’t have one either.  

We have spent a great deal of time evaluating and assessing the past few years what we really want in life, how we want to live it and who we want to share our journey with. We have tightened our circle and weeded through the garden of friendship in the process. While I may appear to share the entirety of our lives here on Grey Matter Life, in actuality, these posts while filled at times with painful honesty, represent a mere glimpse into our lives. We hold deeply our privacy and fervently maintain that we closely guard decisions that affect our children, family and our lives.  

We’ll always be fighting this brain tumor and always be fearing it, however we are moving forward in equilibrium with support from our medical team and with our own personal resolve. With profound contentment and resolve we are moving on and we are living life to the fullest and loving it. 

We are living without fear and we are living with love in our heart and embracing the unknowns that come with my diagnosis as a gift.  

It was with sorrow, pain, disgust, horror and disappointment that I received and read the following words emailed to me this week. I’ve chosen to take excerpts from multiple emails from the same person over the course of two days rather than entire messages since she, nor her words deserve an audience in their entirety.  

You are a bitch, and a selfish one at that. The fact that you are bringing another baby into this world is selfish. Everyone feels this way. I feel sorry for your son, and WE all feel horribly bad for your unborn child.

If you have limited time on this earth, and you already have 2 children that may lose their mother far too early, why would you have another baby only to suffer the same pain. for someone who appears not to be too fond of the kids she has now, why have another? you should be spending every moment you have with them, rather than strangers down at the hospital.

Sadly, I know this person. A mother I’ve known for years at my children’s school, spent time with pushing our children on swings on the school playground and chatting together with other moms. Aside from years spent at school, we’ve never had a friendship that existed outside of the school environment and in the end, whether a friend, acquaintance or stranger, I suppose it really doesn’t matter.  

We stand as a family against this type of verbal attack, hate and malice. It’s cowardly. As Paul put it, hiding behind email to attack another person with words and sentiments they would never have the courage to utter in person is the act of a coward.  

I’ve had to separate my emotions and my feelings and address the bigger picture. This person probably needs help and I sincerely hope she gets it. As one friend put it, you can’t waste time making the illogical, logical and as such there is no rational approach to addressing her. Thus, we’ll never directly respond to her.  

Among many things, I am a mother, wife, patient, survivor and I am an advocate. As an advocate, I approach this attack and I think about other patients and survivors. I think of each of them and each of their unique journeys. I think about their fears and their journey at coming to terms with defining their own new normal. I think about all the decisions that once seemed simple and now seem more complex and I have concern for those who may fall victim to people like this and not have the support system like my family does. I think of those who may not have the gumption to swallow hard, keep their head up and move on from this type of attack.

If you are reading this, have faced an attack like this and feel alone, please know you are not. You can overcome an attack like this and you can move on.  You can rise above this.  

No one should ever have to read these words. I don’t care who you are or what your journey in life is. There are many paths to the same end point and it is not anyone’s place to decide how any of us get there. I hope that each of us in our journey through life is able to face our challenges, re-organize our plans, keep moving forward and find courage with embracing the gifts and the rewards each of our individual lives offer.  

No one should experience the feelings we have this past week and no one should find it appropriate to tear down another human being.  

Our inner strengths, experiences, and truths cannot be lost, destroyed, or taken away. Every person has an inborn worth and can contribute to the human community. We all can treat one another with dignity and respect, provide opportunities to grow toward our fullest lives and help one another discover and develop our unique gifts. We each deserve this and we all can extend it to others. Anonymous

As much as I tried to hide my tears and shaking body from my son, it was a task I was unable to successfully complete. My son saw me at my most vulnerable and he saw me experience something that I hoped he never would. Paul and I simply explained that someone had hurt my feelings. A concept he could understand, it’s also a concept that we can all understand.

We told him and later his brother, that words can hurt people as much as they can bring people happiness. We asked them to always consider the feelings of others and how they would want to be treated before they acted on emotion or anger. In the end we said what we’ve said many times,   

If you don’t have anything nice to say, don’t say anything at all.

We are moving on like we always do with our heads held high. We continue to feel joy and elation at the approaching arrival of our third child and my stability as a brain tumor patient. I feel deep sadness that this person feels that we should have given up on living based upon my diagnosis and refused to press on, enjoy and live our life.

Giving up is not what we are wired to do and failing to live life to its fullest is not how we exist. We will continue to embrace the journey we are on and no one person or their words can take from us or move us to change our perspective or our resolve.

Onward we go…