The “CF card”

Posted: June 21, 2012 in Cystic Fibrosis, mom

I have been trying to squeeze out a blog for a couple weeks, now. To no avail. I apparently am in a fog in the mornings and do my best thinking at night. I can never seem to shut my brain off then. I could write entire volumes if I my pillow wasn’t so soft and comforting.

But, this morning I awoke to an email that was so preposterous and upsetting, my brain starting ticking. I won’t share the intimate details as I feel it unfair but let’s just say I am exhausted of childish drama. It has no place in my life. My husband and I have a hectic life. No, we aren’t gallivanting to exotic locations or whisking the kids to exciting venues, but we are busy. Busy with staying afloat in life. We can’t go anywhere or schedule anything without considering the effects on Colby or how treatments and medical regimens fit into the mix. And, when we need another ‘tune-up’, we have to make a plan for other children and our lives go on hold. We have and continue to endure the loss of his young child, a harsh reality of how precious life is. Somedays, we are strong and steady and other days we are taking turns hitting the floor.

Now, I’m not saying that this life is unbearable. Nor do I think I am ‘special’ or better than anyone else for having a child with CF. But, I have been accused of that. And now, broken because of it.

Do I really come across that way? Good Lord, I pray not. Or is this just someone that knows my weaknesses and my stresses enough to take a stab at me? I try not to be the person that when you ask how things are, go on and on about the burdens or pains that she has. And I don’t lean on too many people for help solving my logistic hurdles. I don’t even share that we have CF until it is absolutely necessary. And when I do share, it’s not in an attempt to gain pity or penance.

Only in extreme circumstances, do I play the “CF card”. Like, having to sit in a waiting room full of hacking and snotty children. We come prepared with our mask but I beg to be placed in a room for fear of catching God-knows-what. Sit me in a room for two hours but, do NOT leave us out here! Scary! And in school, I have to constantly remind the teachers not to be permissive with him. He has to be disciplined and kept in check, just like the rest of us.

So, I am losing my mind trying to dissect myself and make sure that I am not that girl.

In my correspondence I wanted to be clearer about my boundaries. This person wants to be at everything and know everything about Colby. And a constant text of “How’s Colby?”. Apparently, I am rude and don’t love that person if I don’t share the “experiences” and well-being of my child. Whoa. MY child. I don’t owe anyone an explanation as to why I need to deal with things on my own sometimes. Or why I don’t someone in my grill all the time about what they are doing next to him and why. I’m not trying to be controlling or secretive, but some days it’s hard enough for me to wrap my head around things.


The pity for my son is a whole other issue. I can’t stand it. Pity does not yield strength. This is the hand that he (and I) was dealt and it is a heck of a lot better than some’s. He can run and play and learn and laugh. He can go to school and on vacation and ride roller coasters. I don’t coddle him in fear of him refusing treatments or becoming a drama king. Tough love, I say. We don’t have a choice about treatments or medicines and only in the hospital do I allow him to do the one liquid med through his g-tube. And, I still frown upon it. We don’t take short cuts and we don’t cheat.

So, what am I missing? Is it just this person’s need to be the center of attention or are they trying to capitalize on my son’s plight? (You know, the type that likes to always have a sad story to tell about their cousin’s son or whatever?) Or am I the one that needs a readjustment?

  1. biancca says:

    Girl I hear you. And no u don’t need a readjustment. Some folks should just understand that this U and Colbys journey and its hard enough just to come to terms with that. The hand was dealt and the cards being played the way u guys have to play them. Noone else can tell u what cards to give up or what cards to keep. They should just be supportive and watch u WIN!! Sometimes to pacify that person u only tell them what u have to. No extreme details needed because no matter how hard they try, try they will never understand. Be easy chica.. Take a deep breath.. And say “woosah”.. 🙂

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