A Word

There is a word that I try not to say…
A word that I take care not type…
A word that I don’t let float around my mind, if I can help it…
Ugh, there I just said it, typed it and thought it.
Back in May 2010, our lives changes forever. Aiden, only five precious months old was diagnosed with cancer. Embryonal rhabdomyosarcoma to be exact. From that point forward and throughout treatment and recovery, cancer was a word that I said, typed and thought of often. I was at every needle prick, vein draw, imaging scan, chemotherapy treatment and clinic appointment. When Aiden was sleeping, I was either writing a blog entry, researching aplenty (against my better judgement) or trying to follow up via email with family and friends. That word was not something I was able to avoid.
I remember walking my slippered feet over to the pantry on the Pediatric HEM/ONC floor each night. I had a secret stash of my very own K-cups courtesy of a special nurse-friend. Wink-wink. I can still smell the sweet vanilla bean aroma, which delicately flavored my small disposable cup o’joe. I would carry my beverage back to the room along with a few packages of Keebler’s finest and I would snuggle up next to my little snoozer. At that point, I usually lost myself in some quality programming. The Real Housewives of Anywhere were in abundance; the distraction served it’s purpose well.
The thing is, though it was excruciatingly difficult to hear the words, “your son has cancer,” life in the cancer-world became routine. My K-cup ritual was routine. Weekly, often daily, visits to the clinic were routine. Hugging my nurse-family hello and goodbye was routine. Placing Aiden’s nasogastric tube was routine. Eating my congealed bowl of raisin-brown-sugar-hospital-oatmush each morning was routine. Spontaneous outbursts of tears and/or anger were routine. M-I-C-K-E-Y M-O-U-S-E was routine. Port-accesses were routine. Cleaning up vomit was routine. Kissing my sweet Aiden’s big, bald head was routine. Requesting expedited shipping for hundreds of nitrile chemo-grade gloves was routine. As odd as it may sound, I was exceedingly grateful for the “routineness.”
Now unprotected by my involuntary shield as active cancer caregiver mommy, I find the word to be so very loaded. I know this is occurring on a very emotional – almost intrinsic – level but nonetheless, I can’t help it. It is hard to read blogs of other cancer-families and images of children lost breaks my heart a thousand times over. I feel so very compelled to help. I want to lobby on Capitol Hill that enough is not being done to protect our children from the number one disease killer. I want to beat down the doors of the American Cancer Society and yell at the top of my lungs that less than 1% is a miserable donation for pediatric cancer research. And I want to volunteer to help families going through treatment; I want to kiss all the bald kiddo heads out there and hold their mommies and daddies so very tightly in my arms. I feel compelled to do these things, but I know that I am not yet ready. I may not ever be ready.
In this way – for quite a while now – I have been deeply conflicted.
* * *
A couple months ago, I was out with the fam for dinner at our local Glory Days restaurant. Covered in remnants of a meal-enjoyed, I carried my love bug to the door. It was then that I noticed a sign imprinted with the words, ‘Chris’ Crew’. I saw the gold ribbons, the t-shirts and the children. I found my senses heightened. A small voice yelled, “Chris, Chris, come here.” There was running and giggling. I started scanning the room. I handed Aiden to my hubby, walked up to a woman in the center of it all and asked if she was Chris’ mom.
“No, but she is right there. Hey, Amy!”
Then I saw her and started babbling. I don’t really know what I said. Something like. “Hi, I am Leslie. This is my son, Aiden. He has been in remission a year and a half.” I may not remember the words, but I do remember the hug.
…the connection.
This past August, 7 year-old Chris was diagnosed with Wilms Tumor, a rare type of kidney cancer that occurs in young children. The family started a Facebook page, “Chris’ Crew” which I urge you all to visit. Chris is doing very well and serves as another inspiration (along with his extremely strong mama) to me.  Actually, Chris’ whole family – daddy and sister, too – are sources of inspiration.  Please keep them ALL in your thoughts and prayers.
I believe it is true that people do come into our lives for a reason.
* * *
Recently while trying to wrap my head around actually writing a book, my book, that damn word popped into my head. I don’t want to write about cancer. Yes, it is part of my story, but it is not THE story; cancer is just a piece of it. I want to write about being a believer of miracles and a celebrator of life. Perspective, perspective, perspective.
That is when it hit me. I am the one allowing the word to encompass so much more. For this reason, I decided to write this very entry. To say the word, type the word and to allow myself to think it. To share my limitations regarding outreach and advocacy. To stop letting a word scare me. Facing fear head on may require a lot of strength in the planning phase but once the obstacle is conquered; energy, ardor and confidence replaces said fear.
Yes, I still hate the word, cancer, – and I always will – but I will not allow it to control how I think, talk and write. Aiden is thriving despite all that he has been through and honestly, I am thriving too. I may not be able to take on our broken healthcare system, but I am still committed to making a difference in my own way.
I just said it, typed it and thought it.
…And I am okay.
You’re braver than you believe, and stronger than you seem, and smarter than you think.” –A.A. Milne
Tiny Moments – The Past Couple Weeks in Review:
Our “half” snow day
The BEST snowman ever (before our neighbors got to it…hehe)
Letting creative juices flow
Iron Aiden
Balancing with Papa