Gut Check

I feel ashamed that someone else’s pure joy causes me such sorrow.

Today at infusion, I noticed a family with balloons, flowers, and lots of visitors. My mind tried to convince me, “it’s the little girl’s birthday”. But when they gathered in the corner outside our room and I heard the warrior bell ring, my heart knew the truth.

When I’ve heard the bell in the past, it brought tears of joy. Happiness and a sense of relief for the family that gets to move on to the next chapter with their little warrior. Today Cooper heard the bell, and said “what’s that?” I explained it was the warrior bell, and that the little girl got to ring the bell because she’s finished her last chemotherapy treatment. Cooper wanted to ring the bell. Through tears I told him he’d never be able to ring that bell. I was angry, sad, frustrated. I started to remind Cooper that his MPS diagnosis is life long, but when I looked at Campbell, she said, “You can ring it when we find a cure, Coop!” I high-fived Campbell for bringing the sunshine back into our room and sucked back my tears.

So I’ve been in a funk all day. It’s like I’m reliving diagnosis all over again. Wait, this is LIFE-LONG? For the rest of my life, and more importantly, for the rest of Cooper’s life, he’ll have infusion once a week. He’ll visit many, many specialists. He’ll have pain, probably several surgeries. He’ll look different. He’ll feel different. All things that make a mama’s heart hurt.

I just want him to ring that damn bell, I want him to be free. Time to work harder for a cure.

Tonight two of Cooper and Campbell’s cousins are over for a sleepover. They were all giggling in the room, tossing and turning, until they finally gave in to sleep. Campbell and the cousins see Cooper as Cooper, a sweet, passionate, sports loving, funny 5 year old. I need to pause and etch this picture in my mind: He’s a kid, who played with friends outside until dark, snarfed down homemade cookies and is enjoying a summer time sleepover, just like other little boys his age. This is what I want, to see him as Cooper, not the kid with a life long, devastated disease.

2 thoughts on “Gut Check

  1. Thank god for those kids! Campbell for her positivity and the cousins for giving Cooper friends (family!) who treat him just like other kids and let him live like all the other kids! Love to you. What you’re feeling is honest and understandable, it’s essy for me to tell you not to feel guilty about it, harder for you to ever not feel guilty (and simultaneously angry!) about it!!

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  2. This Grandma (AKA Gwama to Cooper & Campbell) has an aching heart when I, also, see that bell at Children’s. A bell that is rung in triumph after a battle. After 200 infusions, in generally the same room of 2 hospitals, the only time i really notice the bell is when a baseball or spiraling football is sent down the hallway from a 5 year old Cooper destined to beat any opponent in the field. In my heart I kind of wish he would hit that bell with his ball, but I think he also knows it is a special bell, meant for special people and special times.
    So as we continue this battle with Cooper, I need to think about all of the other bells he will hear…..

    Christmas Bells on a tree
    And Bells upon a sleigh,
    Jingle Bells and silly songs
    You share with friends at play,
    A Bell hung ‘round a cow’s neck
    A percussion tool it is,
    But when Roscoe & the Doggies play
    Super Coop drums that Bell Away!
    The church’s big Bells,
    The small hand bells,
    He hears them as he plays,
    And even Gwama’s windchime Bells
    They tinkle as he sleeps.
    There are Bells around the world he’ll see
    Like Big Ben and German Glokenspiels,
    And as they slow the ski-lift down
    The Bell will peal for Coop,
    But the Bell will also ring
    As he dives into the pool,
    To do his Personal Best
    At whatever sport he chooses,
    Because when it comes to Cooper
    This Angel has his wings,
    And he’ll show each one of us
    How to fly and ring that Bell.

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