September 8, 2007

Not quite "feelin'" it tonight. Ever had those days?

Truthfully, I should be bouncing off the walls. I've lost 8 pounds! Eight pounds in 8 days - not too bad. Frankly, darned worth the restrictions. Problem is, I'm kind of in the what-does-it-really-matter mode. I'm frustrated. I'm also utterly, totally convinced that I'm not reaching a single human. I know, I'm at the beginning, taking baby steps. I guess, its the complete round of "ignoring" my friends and family have drowned me in.

In all fairness, I did try to do a Fat-A-Thon while my daughter was on treatment. My motives were pure, I wanted to donate the money to a charity we started in her name. (giving back to kids at our local hospital) But, get real, I didn't get to be this size by having great will power. Let's see, if I eat when I'm stressed...do you think trying to lose weight when your baby is going through chemo is wise? Duhhhhh.... Yeah, not necessarily my brightest idea. So, you see, I'm sure people who know me figure I'm going to fail again this time. Problem is, if they really knew me, they'd know how much my heart has changed.

I guess my case of the blahs is due to a common phenomenon we often discuss in my on-line pediatric cancer parents' list. We're a group of ALL (Acute Lymphoblastic Leukemia) parents who share news, concerns, celebrations, and most of all...heart. These amazing people are responsible for not only bringing me out of a self-induced depression and isolation; but they have given me the strength and the commitment to do this insanity - for all of "our" kids. Anyway, the phenomenon I referred to could perhaps be described as "time sensitive apathy". With ALL, chemotherapy lasts a minimum of 2 years 2 months (girls) and in some recent studies for boys - up to nearly 4 years! Yes, you read that right - 4 years.

What I've come to find out, is that pretty much all of us have endured the loss of support due to t.s.a. . Even those of us lucky enough to have people rally around us in the beginning, are usually flying solo by the time we reach the big OT (off treatment) day. And post treatment? Are you kidding?! My daughter has brain damage requiring a permanent shunt in her brain, osteoporosis, joint damage, is awaiting her wheelchair, memory issues, is losing her eyesight again, and faces an uncertain future. But, ask me how often anyone wants to listen about a procedure, a test, or therapy. A few people cordially ask - but most look bored to tears if I try to tell them the truth. I can pretty much count on one hand the people who can tell you what all she deals with on a daily basis. Basically, once our kids aren't "news" anymore, they're not nearly as interesting to hear about. If people only knew how much that hurts some days...

Do I blame people? Not really. The fact is, we live with the doctors' appointments, side affects, whining, pain, and daily struggles - they don't. After all, the first thing everyone says is, "She looks so good". She does, unless you look at her x-rays, blood work, or test scores. Sure, she looks happy when they see her - its usually at a happy event. What they don't see is the daily struggle with pain or the frustration we face as she "loses" even the smallest pieces of information some days. She, and all other cancer kids, are the perfect examples of "Don't judge a book by its cover." In the thick of treatment, a pale, bald, emaciated child may look horrible - but still manage to find joy each day and live life with fervor and meaning. Conversely, an off treatment child may have hair, be nice and filled out (look good)- and fight issues that only their parents and doctors can "see". Both are poorly served by people too willing to walk quickly in and out of their lives.

I guess I'm particularly cranky this evening because my feelings are bruised. Two ladies that are part of my online group created a masterpiece last weekend. They recruited pictures of children from our group, and made what may come to be known in our world, as one of the most beautiful, honest, and touching video tributes to pediatric cancer warriors. The video is as real as it gets - and truly conveys our reality - in a mere few minutes. If you are willing to expand your heart - watch it. http://www.youtube.com/watch?v=AGS4yE5v9rM

My daughter and husband are part of the video - with a very powerful message on their slide. And the ladies honored me deeply by using a quote from my site, "One child lost is too many, One child saved...Can change the world." As I dreamed up crazycancermom.com, I wanted a way to convey my feelings for the children I've met during this journey I remembered how the death of one special little girl truly devastated our family and changed our perspective so much. I also remembered what I would hold onto, during the worst nights of fear, as I watched my daughter breathe in her sleep. I survived by reminding myself that we'd been told by a sensitive, that my daughter would grow up to have a "great voice. She will affect many people and do great things." I clung to that for life - I couldn't lose my daughter - she had to grow up to change the world for the better. There you have it, the quote for the site.

So, here is this video - so terribly personal and meaningful to me. While it does make me cry, it makes my heart sing too. As my friends released it for the world, grand, explosive things began to happen. The video quickly raced through our "cancer community". Its been posted on national websites and countless children's web pages. Its being made into a DVD so charities and hospitals can use it for awareness seminars and presentations. Its been sent to congress to convince politicians to pay attention to the children it portrays. The video, and these women have made a difference, and its amazing.

I, of course, wanted to do my best to pass it along. I immediately linked it to my crazycancermom site and spent two days drafting the perfect letter to accompany it to my friends and family. I poured my heart out about Childhood Cancer Awareness Month and its dire importance this year. I thanked people for their past support and described how personal this video was for us. I finished the letter by inviting everyone to this adventure, my most personal of personal endeavors... 50 people I sent it to...two responded. Some people had to send the video home to view it - and then never did. Some people were too busy that day. Some people were irritated it was to support research instead of their own charity of choice. (entirely missing the point, by the way) But mostly, people were just too in-their-own-lives to take the time to peek into ours.

And if you think they were too busy for the video - oh let me clue you in about the fat-a-thon festival! Hah! I have personally had the unfortunate opportunity to ask several of my recipients what they thought about the new website. My invisibility is proof positive they never even bothered to open the email. Yeah, I admit it, I'm bruised and a tad bitter tonight.

But, as any cancer child would tell me - get over it. I can't change what is - I can only change how I react to it. My former self would have said "What the heck, nobody cares - so eat the stupid brownies. It doesn't matter anyway." You know what? My former self would have been wrong! It does matter. These kids MATTER. I'm basically experiencing exactly what the whole cause of pediatric cancer is facing. I'm being ignored because it takes concerted effort to be involved in something.

Its easier for people to go about their own days and not open themselves up for a minute to something else. Its easier to read a note, maybe watch a video, then push it out of your mind without so much as a "Thank you - that was touching.", or "Good luck! I'll be rooting for you!". Its easier to not check in on a blog - because ooohh - maybe one day the author will have a bad day and be honest about it. It is easier - I don't deny it.

That's the entire issue our children face. Its easier for Congress to ignore them - there aren't as many of us fighting for them as their are lobbyists for breast cancer or heart disease. Its easier to ignore kids with cancer, because their numbers don't represent enough revenue to make them attractive to pharmaceutical companies. Its easier to ignore our children, remark that they "look good" and convince yourself that everything will/has worked out just fine...because its easier than admitting children with cancer suffer, children with cancer die. Its easier to act like it could never happen to you...because that's what we all thought - until we heard the fateful words, "It's Cancer."

No question its easier - but that will NEVER make it right. Take a moment, make a stand...make the effort to take the time. A child and the mother who will do anything to keep that child...will appreciate you.

Comment or not - I'm OK. I'm going to keep fighting and I'm going to keep losing (weight). Its NOT easier - but its worth it.
-Alicia - proud mom to 4 beautiful children - one of whom is the bravest girl I know.

Daily menu - did fine today, but don't feel like sharing. So there.