Isn't it Ironic?

I did not have verbal children--when they were little that is, and I was too ignorant to be concerned! One of my favorite stories about Pierce was that one day I was watching his friend Kyra for a couple hours, the first time I had been alone with Pierce and a peer. The kids were both on swings, right next to eachother, and Kyra said "Lisa, the sun is in my eyes, would you please go inside and get my sunglasses?" And as I was starting to say "Sure," and go in the house, Pierce said "Ga ca me!" Well I knew that meant "I would like my sunglasses also," but surely no one else would have! As I went inside to fetch the desired lenses, I pondered the lack of verbal ability in my child, but really, what could I do? When Bo was the same age, he was just as non-verbal, but our parent educator was way more concerned than the first one had been. She worried that he had hearing issues--it turns out he did have a problem with intermitent hearing deficiencies when he had asymptomatic ear infections, but it took us about 4 years to figure it out! But really, he just wasn't verbal either, mostly he made car sounds, "brrrrrrrr, crash, mmmmmmmmm..." Not many words. So when he did speak, it was usually with meaning.

So isn't it ironic, that from a very young age, Bo took to walking up to complete strangers and telling them in his deep and gruff little voice that "if you smoke, you will die." I am not sure how or why this became important to him, but it did. In the same way that after many conversations about why one must wear "sunscream," on the day the news was filled with stories about Ronald Reagan's daughter succumbing to skin cancer, a little voice emanated from the back seat of my car saying "She did not wear her sunscream." And so now, isn't it ironic that the experts have voted and the final diagnosis is carcinosarcoma without excluding synovial sarcoma. Carcinosarcoma is a VERY rare lung malignancy, less than 200 cases in all the history of the world, mostly in old men who have smoked for a lifetime and 90% of them die of the disease. No one knows how or if it can be treated. Some have opinions, but there are no studies, there is no evidence based research, nothing, nada, zero, zip, nil.

If this experience has been a roller coaster ride so far, I feel like today we came down the BIG hill and crashed. I have every hope in the world, but as Amy's story shows, hope and faith are not what it takes. Amy had BEAUTIFUL faith and still her life was stopped in its prime. There is not enough faith in the world to change your destiny, but it sure would be nice if we could just know that so we can accept it and live with dignity. But we never really get that gift. It is choosing to live our lives with grace and strength even in the face of hardship that separates the strong from the weak, and so we will be strong, no matter what the fates bring. We will be strong for Bo so he can give it the best fight he has. But tonight I will cry.

And the other irony is that today, for the first time, I felt like I was in a good place. When I first started this blog, and for a good week or two after, I was in denial. You can read anywhere about the stages of grief, and denial is the first. But denial doesn't necessarily look like you think it does. It is not a delusional denial--it is a state where you close you psyche to the emotional payment of acceptance. When you are in denial you can't talk about it because that means facing it, and facing it means opening yourself to the other stages of grief, anger, bargaining, depression and acceptance--all of which were impossible for me at the time. I am not the kind of person that can be angry or bargain, I can only deny, be depressed, or accept. I have a child at stake, so depression is not an option either, and I was not ready for acceptance. Today I thought I was ready, but I was wrong. So after I cry, long and hard, I will go back to denial because that is the only way I can make it through the day with a smile for Bo. With love, Lisa