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Wednesday, July 9, 2014

Baby steps . . .

I took a step toward something today that was more difficult than I thought it would be, and I'm still completely terrified about it.

A few weeks ago I had an appointment at the VA Hospital here to get set up with a new Primary Care Manager. In discussing my medical history, Keeghan's death came up. The doctor asked me if I needed a referral to a counselor to talk about it. As I was saying my normal, "No, I'm fine" my husband was sitting behind the doctor nodding "yes" at me. I'm not sure why, but that reaction from him immediately had me in tears. So of course, the doctor immediately put in a referral to psychiatry for me.

I received a call a few days later from a Social Work Supervisor who was very kind, starting the conversation by extending his condolences. He then talked to me for a few minutes about possibly referring me to a support group for grief management, stating he thought that might be more helpful than individual counseling.

For the past few years, I have "used" my friends in the cancer community as my support group, but I now know that really wasn't helping. Instead, it was having the exact opposite effect, making me feel even more isolated because so many of them are not where I am. They still kiss their children goodnight. Their children have unique post-treatment issues of their own, something I will never understand, but damn it . . . they can still hug their child, tell him they love him, fight for him. They have no understanding of how helpless I feel not being able to do any of those things.

So maybe this group therapy thing will be good. I've not had good luck with individual therapists because I've never had one who actually gets it. They have education and fancy titles, but they haven't experienced it. They just don't know.  But I'm so scared. Getting into a room with others who do get it, opening up and sharing ... I don't know if I can do it. It's easy like this, behind my computer screen, no one to see how often I have to walk away and sob to get through typing a few paragraphs. In a room of strangers ... I just don't know.

But I'm going to give it a try. I called the social worker today and discussed finding groups that are cancer specific, preferably childhood cancer specific. I'm going to call a couple myself and he is going to put out feelers to see what he can find.

Baby steps. That's what it has been since Keeghan left. A little bit at a time.

Wish me luck.


Monday, July 7, 2014

Broken thinking.

life begins . . .

grow, play, listen, learn
life’s early challenges

plan, prepare, study, apply
youth’s dedication

choose, try, work, earn
high expectations

fall, plan, love, hope
a shared journey

conceive, deliver, routine, normal
life in motion

tragedy, fear, nightmare, death
wait, what?

wish, pray, beg, cower
how can this be?

struggle, hurt, question, continue
what choice is there?

different, misfit, pariah, lonely
not my fault

want, need, chance, opportunity
is it too late to start anew?

doubt, frustration, anxiety, impatience
just let me prove myself!


life so far . . .

Wednesday, July 2, 2014

Backlash ensues.

It seems my last blog post has caused quite the stir. Interesting, considering I never stated the names of any of the people I was writing about. Since one of them is no longer living, I can only assume the other chose to tell everyone I was writing about her.

Attention.

Keeping it real folks, I did not set out to "smear" that person. Anyone who knows me knows that writing is therapeutic for me. Something that was causing pain needed to get out of my head. I waited over two months hoping the other person would reach out. I was the one who was judged, remember? Was I supposed to be the one to beg forgiveness for my honesty? Should I have begged her to try to see my perspective? Do I always have to see things the way she does?

I became a part of this 46 Mommas group way back in 2009. I thought then that getting 46 women in one room was a crazy idea. Five years later, I still do. I've met some amazing people and I've met some nut jobs. Most of the women I've met fall somewhere in the middle. One of the challenges of joining a group like this after your child has died is that no one knows you as an actual "cancer mom." You're an "angel momma" - a phrase that bites me in the ass every time I hear it. I have been a part of conversations with other "cancer moms" where it was like everyone at the table forgot that I once actively lived the life of doctor appointments, labs, and scan anxiety that they still live. It's only when they realize I haven't said anything in a while that someone feels pity and throws me a bone - "did you ever have to deal with this with Keeghan?"

It's lonely. It hurts. It isn't fair.

But because I was friends with these people, I smiled and nodded a lot, and then cried in the car on the way home. When something happens, i.e., the death of the man I spoke of before, that I have far more knowledge and understanding of than these other people do and I express an honest opinion, I'm wrong.

So be it. Hate me. Call me names. Make yourself into a martyr. Let anger turn you into someone like the man who died.

My life will continue on. I will forever cherish the sisterhood I once felt with that person, albeit tarnished by the way it ended. Those who appreciate my honesty, understand my perspective because they have been there, or accept my perspective because they honestly can't come close to understanding it, will still be my friends.

To all of the saints out there looking down on me - I wish you well.


Tuesday, July 1, 2014

Be careful who you judge.

I had someone unfriend me on FB a couple years ago because I called her out for (imho) being shallow. Her husband couldn't go to a function with her (for the record, it was Wine Fest) and whined about it on FB, saying "FML." I called her out on it because I didn't think something so small called for that (stupid) phrase. She unfriended me for it, and I was just fine with letting the friendship go.


Recently I chose to end a friendship with another friend, a cancer mom who (I thought) was a good friend of mine, because she judged me on something I said on FB. I had just heard about the death of a man whose son, like my own, died of a brain tumor a few years ago. I won't lie, I thought this man was horrible. He did not allow his son to die with dignity, instead posting pictures of the child vomiting, naked and being held up on a toilet, and in the end, of the boy's ashes in a plastic bag with a face drawn on it. The man was despicable. So when I heard of his death, I posted "karma baby" on my FB wall.  I did not use his name. I didn't need to because the number of people who shared my feelings about him knew exactly what I was talking about.

Let me get something straight right up front: I am not happy the man died. That isn't what I said. But I do feel karma came back to bite him because he was so negative.

My friend never said anything about my post. A couple of weeks later though, I sent her a text message asking if she knew how he died. What I really wanted to know was if his anger over his son's death led to his own end. I have fought to control my anger ever since Keeghan died. Most of the time anymore I succeed, but that wasn't the case in the first few years. Anger ate away at me like an invisible flesh eating disease and the only cure was for me to recognize it and harness it. My friend didn't ask why I wanted to know though. Instead, when I asked if she would tell me if she knew, she replied that she would not, followed by, "Do you want to gloat?"


gloat
glōt/
verb
  1. 1.
    contemplate or dwell on one's own success or another's misfortune with smugness or malignant pleasure.



Yes, that is exactly what I wanted to do. I wanted to dwell on how much more successful I have been at what? Grieving? Staying alive after my son died? I am totally the kind of person who wants to jump up and down with malignant pleasure over the fact that this man died. At least that is what my FRIEND thought of me.

My thoughts about all of this brewed in the back of my mind for a couple of months. To say that I was angry would be a lie. Angry is far too mild a word. But it took some time for me to really analyze what it was I was feeling. This person had walked the Cancer Path with her child for a while, and the path she walked had absolutely been horrible, but her path was short and she arrived at the other side with her son still beside her. In that respect, the path she traveled with her son and the one I traveled with my son shared very few commonalities.

The man I speak of who died had walked a much more similar path. We both dealt with very young sons being diagnosed with brain cancer. Both of our sons relapsed. We both watched as cancer took away our children's ability to do basic things like walk, talk, eat, sit on a toilet without assistance. We watched our boys DIE. Our paths were very much the same. It is the way we dealt with our journeys that differed. 

When my son reached the point where his brain tumor made one eye start to turn to the side, I still took pictures of him because every moment was one to be cherished, but I never posted them out for all and sundry to see. When he needed his dad to help him sit on a toilet, it never occurred to me to run and grab a camera to take a picture of it, let alone post it online. And my son's ashes are treated with respect, always. ALWAYS.

Additionally, I have never badgered anyone to donate money to cancer research. I've never tried to make someone feel guilty for not donating, had my friends attack them on Facebook, or belittled those who didn't jump on my bandwagon. He did. Loudly, publicly, and with complete malice, all born of his anger. Anger I could understand.

This person I had called "friend" judged me - harshly - on something she had no understanding of. None. Her path didn't come close to what mine and this father's had been. Do I have the right to judge him? Most would say no, but I say yes. Tell me I'm wrong, but unless you've also walked our path, I'll tell you to shut the *#@% up because you don't know anything. Just like she didn't. 

Maybe this is a case of tit for tat - I was unfriended for judging someone, and then I unfriended someone for judging me. 

C'est la vie.