Friday, September 22, 2017

Friday, September 22, 2017

Tonight's picture was taken on June 15th of 2009, literally minutes before Mattie's sternotomy. In the pre-op area we were trying to make the mood lighter. After all Peter and I both understood that when osteosarcoma moves to the core area (spine, lungs, etc), it becomes an even more deadly disease to treat. In addition, Mattie's cancer had metastasized while on the most aggressive forms of chemotherapy. So you can put two and two together. 

We really loved Mattie's lung surgeon. He spent a lot of time with us prior to Mattie's surgery, answered all of our questions and after Mattie's surgery was complete, he personally visited us daily. He did not send in one of his fellows or residents! That made a huge difference to us and to Mattie's care. As you can see from this photo, we wrote a message to Dr. Chahine (prior to being wheeled into the operating room) and taped it to Mattie. It said.... Give us a Mattie Miracle. 

Quote of the day: They say a person needs just three things to be truly happy in this world: Someone to love, something to do, and something to hope for.

~ Tom Bodett

Last night a friend of ours introduced us to this unique greeting card line. I had heard about Emily McDowell's "cancer cards" through social media, but frankly until last night I never actually saw them. I believe when her card line originally was launched, there was one particular card that was an instant success as it addressed the complexities of relationships. But since then, her card line has expanded. Under the "empathy" cards, you can find cards very applicable to people diagnosed with cancer. 

https://emilymcdowell.com/collections/empathy-cards

Here are five of my favorites. The first one says, "please let me be the first to punch the next person who tells you everything happens for a reason." 

I can't tell you how often I heard this.... both after Mattie was diagnosed and when he died. At NO time did or do I find this platitude helpful. In fact it infuriates me and is such a trite statement. 

What this implies is that cancer makes our lives better. In fact recently I was on Capitol Hill and a young survivor of cancer, actually used these words...... that cancer has enriched her life. I honestly can't relate to this comment at all, and frankly question why she was selected to speak on behalf of childhood cancer survivors. Most survivors have long-term physical and psychosocial consequences to such toxic treatments, and though they maybe able to put these side effects into context, their lives are forever altered. Putting a smiley face to survivorship is not only disingenuous, it is disrespectful to children and families dealing with this aftermath. 

This is my second favorite card. It states, "I wish I could take away your pain, or at least take away the people who compare it to the time their hamster died."

You maybe asking yourself..... what???? Well this stuff actually happens. After Mattie died, a family friend literally said to me, "I know how you feel, because my horse died."

I really think that receiving such a card, not only brings about laughter, but it makes your head nod up and down.... indicating YES THIS HAS HAPPENED and I DON'T LIKE IT!

This is my third favorite. "Together we can find a cure for the phrase, what doesn't kill you makes you stronger."

Again this is another platitude which is doled out VERY often. But of course just like the one above, it serves no purpose to the recipient. More likely it benefits the deliverer.

My fourth favorite states, "I'm so sorry your sick. I want you to know that I will never try to sell you on some random treatment I read about on the Internet."

When Mattie was diagnosed with cancer, I received many email suggestions from people following our story. Everything from new treatments to consider to vitamins, and the list went on. I know this can be very overwhelming and stressful for some families. I was actually okay with this, as I took this as people trying to help us, not to judge the treatment Mattie was given. However, whatever was sent to me, I would share with Mattie's doctor. I would have to say HE WAS THE ONE WHO WAS ANNOYED! Clearly I didn't care how he felt about this!

This is the last card I am sharing. This one says, "If this is God's plan, God is a terrible planner." Guaranteed, if a loved one died you are going to hear this term or better yet.... "God's will." Either case, both are typically very poorly received. I honestly do not think God wishes any child to be diagnosed with cancer, and to suggest this, is not only misrepresenting God as a higher being, but it is also hurtful to the recipient. Because it makes it sound like you were singled out... for whatever reason! No reason WORKS! 


I would love to say that such insensitive comments ONLY come from people who have not experienced child loss. I can't tell you how many other bereaved parents have set me off over the years. It is true we all grieve differently, but parents who are grieving sometimes believe they know how to manage their thoughts and feelings and wish to instill this on you. Unfortunately grief doesn't work this way, and an insistent plan or methodology can be a total turn off. Which is why the support group model never worked for me.