The First, Most Terrible Time

May 17, 2012 | All About Denver, Cystic Fibrosis, Special Needs

[flickr id=”7215498312″ thumbnail=”small” overlay=”true” size=”small” group=”” align=”left”]It has been barely a year since the diagnosis.  It has been almost a year and a half since we started the journey – all because of another round of pneumonia.

Since the diagnosis illness has kept its clammy hands away.

For the first time since the diagnosis, Denver is sick.

It started as what appeared like an allergy but quickly devolved.  A mild fever, and an ugly cough. More coughing. Then more.

In a wonderful coincidence there was already an appointment scheduled.  So yesterday he went.  At the hospital all day running standard yearly tests. Waiting, still coughing, still sniffling, until he could see the doctor.

Within two minutes of her walking in the room she heard the cough. The look on her face said it all – it was ugly.

There is crackling in his lungs (the mucous) and it’s visible on the x-ray.

For now he is home on heavy doses of steroids and antibiotics. The instructions we are used to for the little one now apply to him. “Call if there’s any change” and “Come back in a month” have been said.  Unlike her he can take full on pills (HUGE pills, blech), and most of his care is in his own hands. I mean, what teen wants their mom snuggling and coddling them?

There is nothing to panic about.  He intends to go out and go through his “Ordeal” for the Order of the Arrow in Scouts despite his illness  with his drugs in hand.  Just like the diagnosis he’s not letting it slow him down (Did I mention he kicked butt in Track & Field this year? No?  Well…he DID).

Still there’s that part of me that always panics.  Deep down where I keep it hidden I wonder how/if this will affect the strength of his lungs. If it will change the depth of his illness (currently he’s ‘atypical’ and we like to keep it that way).  His lung functions yesterday were horribly bad, so how will he get through his “Ordeal” this weekend…and forcing myself to not be ‘that mom’…especially given the name and motto of this blog (living life beyond our labels gets really damn hard sometimes).

Part of me wonders if he has that internal panic too.  Wishes that if he did he would talk to me about it.

But he is a teen.  He is stubborn. He keeps things close to the breast.

And he laughs in the face of CF (when laughing doesn’t throw him into a fit of coughing, that is…).

Sarah

1 Comment

  1. Jennifer James

    Your children are amazing. 🙂 Testament to their amazing parents, I think. 😀

    He’s a fighter. Let him fight.

    Reply

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