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By Joan Shannon, guest blogger
Monday, November 25, 2013
Kathleen Shannon, with her 5 year survivor celebration cake
Kathleen Shannon, with her 5 year survivor celebration cake

To set the record straight, my favorite color is not pink. Its yellow (although purple is a real close second). And not the bright sunny yellow that I used to want to paint on my bedroom walls when I was a child. I settled for painting ceramic cutouts of my initials in the brightest, sunniest yellow I could find and hung them on my bedroom wall when my parents were less than sunny about the idea. These days, my favorite color has taken on more of a golden hue. This fact was rather apparent two months ago when I went to pick up a cake I had ordered at my local grocery store. I was swiping my card at the checkout lane when the cashier,  looking at the golden yellow ribbons adorning my cake in frosting said, in her most - I’m so sorry we didn’t get your order right -  voice, “I don’t know why our bakery did this. It will only take me a minute to run it back and have them redone in pink for you.” “No,” I said. “They aren’t supposed to be pink, they are supposed to be gold. It stands for pediatric cancer. The cake is for my daughter.” “Oh,” she said. “I didn’t know.” “Not many people do,” I told her. Not many people do.

I saw this encounter as a wonderful opportunity to bring pediatric cancer awareness to yet one more person in the world. It is a fact that I myself, sometimes wish that I wasn’t aware of. You see, the cake – adorned in its golden yellow ribbons and blue (my daughter’s favorite color) swirled frosting - in the shape of the number 5, marked the 5 year anniversary of my daughter’s brain tumor diagnosis. No longer was she newly diagnosed, in treatment, just out of treatment, in remission or any other term given to the various stages one most go through upon being given the diagnosis of brain cancer. She was a full-fledged survivor. And I was now a full-fledged mother of a survivor. A lot has changed in those 5 years.

One thing has not, I am still a mother.

When the opportunity to write about this fact presented itself for National Caregiver’s Month, my first thought was, “But I’m not a caregiver, I’m a mom.” Caregivers are those kind souls who no longer have to or want to work and can spend their days volunteering to assist the elderly and the sick with their tasks of daily living. A wonderfully and personally rewarding experience that not only provides a much needed service to those on the receiving end but also enriches the lives of those giving the care. Someday, when I no longer have to or want to work, I’d love to be a caregiver. But now, no. I love my career and I’m just a mom.

Maybe I better check the dictionary for the definition of “caregiver” – “an adult who cares for an infant or child.” Yes, I do that. But, I have done that since my oldest daughter was born 24 years ago. It’s no different now that my youngest is a survivor and wasn’t any different when she was diagnosed. I am the one who took her to the emergency room, who talked to the doctors, decided on treatment plans, rode in ambulances between hospitals, carried a bag full of necessary comfort items on chemo days, made sure a clean puke bucket was in every room of the house, washed her hair, made 3 different meals for dinner in the hopes that at least one of them would not only taste good to her but stay down and then ran out anyway to pick up fettuccine alfredo and bread from the Italian restaurant for the fourth time in a week because it was the only thing that tasted good to her and stayed down. I am the one who talked to teachers about keeping up with school work only to have to enroll her in the hospital homebound program because she was unable to attend school, the one who coordinated as many activities with her friends as she was able to do so she could have as much of a “normal” life as possible only to watch those friends disappear from her life as they moved on to different schools and circle of friends, the one who pulled out the sofa bed in the family room downstairs when she was no longer able to get up and down the stairs to her bedroom, the one who sat beside her with my work laptop on my lap be it on the other end of the sofa bed at home or the next chair in the infusion room at the hospital, the one who talked to yet another doctor on my cell phone while dialed in to a conference call on my work cell phone, the one who turned down yet another invite from friends even though they told me that I needed to get out and that who knows, I might meet somebody and I am the one who answered “I am” each time a doctor, nurse, tech or other hospital staffer walked into the room and asked, “Who’s mom?”   

I didn’t answer “I’m her caregiver.” That wasn’t even the question. But it is what I am as her mother. Caregiving responsibilities came with that title. Being her mom means being her caregiver. One doesn’t come before the other. They are both intricately and irrevocably wrapped into each other. There is so much to write about as a caregiver. So much to talk about being a mom.

I’m just a mom who happens to care for a daughter who has been diagnosed with a brain tumor.

Which is why I took that cake home with its golden yellow ribbons, made my daughter pose beside it and proudly posted it on Facebook showing everyone that she had joined the “survivors club”.  I’m just a mom posting the ordinary life events of my daughter, who just so happens to also be a brain tumor survivor.

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