11 July 2010

Breck's Thoughts: I'm Done

For nine months, we've fought this CF monster. And for nine months, I've fought to find my son. I've fought to find him behind the locked doors of the NICU, under the multiple tubes and cords of his hospital bed, in between colds and flus, among the medications he takes, in between doctor visits, behind the pain/rectal prolapse he experiences. He's there. But it feels like so many times I find glimpses of him, rather than the whole him.

It's not that the NICU, the hospital/surgeries, colds have lasted forever. But they have lasted much longer than I expected. They have taken up much more time than I have wanted. When Bennett doesn't feel well, he isn't himself. And himself is what I am looking for.

I've resigned myself to the reality that this CF monster cannot be erraticated fully, at least without a cure. But I haven't resigned myself to the reality that the CF monster is hiding my son...until now.

I can't find him sometimes. I get peeks: nudges from him, smiles that tickle my heart from its depths, laughter that entices even the worst of moods. But those are often the exceptions, rather than the rule.

The doctor told me two weeks ago that Bennett's pain is just something we're going to have to live with. Fortunately, now, we have a few more brilliant minds on the case considering that this should not be the case.

But it's exhausting. I've fought just to have the experts hear me. I've fought just to keep Bennett cleaned up and happy. But it's gets so tiring sometimes...because it feels that no matter how hard I fight, the CF monster still wins. And ultimately, I know, that, without a cure, the CF monster will win in the end.

I told Brian today, "I'm done! I'm just done."

I'm not really done. Done would be to walk away and ignore the problem. And I would never do that. Ever.

But my heart aches to see this over with. done.done.done.

Sometimes, in my quiet moments, I see the temptation to go there emotionally, pretending it's done. Trying to ignore that he has CF. Wanting to ignore the things I cannot solve, wanting to fail to remember to do his treatments. Trying to convince myself "what's the point anyway."

And then I feel guilty. incredibly guilty. because how horrible a mother I am to ever even think of wanting to give up on her child.

But it's not that I want to give up on Bennett, just the opposite is so...I want to give up on fighting CF.

It's too big to fight. It's too complex, too frustrating, too overwhelming.

I'm still having to remember that I am not just any mom anymore. I'm now a mom of a special needs child - where my expectations are no longer just to care for my child's basic needs - to love, stimulate and discipline them.

Now I'm a mom who is required to do all of those things, in addition to caring for many other things that we take for granted.  Now I have to worry about his intestines falling out of his rectum, his lack of interest in taking a bottle, his body's inability to absorb his food, his delayed milestones, his pain that prevents him from fully engaging with his world.

Moments of freedom from the disease, such as my week away from caring from Bennett, are equally beneficial as they are oppressing. They both remind me that there is life beyond CF...and yet they make me long for a CF-free life more.

Today, while confronting these whirling thoughts and actually stopping to try to listen to them, I realized that my heart is praying for all of this to be done.  I'm not fully conscious of it but it is.  Sometimes I pray it to God, sometimes I pray it to myself.

I want this to be over. I'm only 9 months into it and I'm already ready to hit the "restart" button.

This is just grief, I know.  I may have already accepted the past, but I must also accept the future.  And as long as I'm breathing, every minute that goes by, provides another minute to come.    I must continue to accept the future, again and again and again.

I must continue to accept my responsibility again and again and again.  This is where God placed me.  And this is where I will stay.

1 comment :

  1. Such nicely stated. I think you said what we all feel as moms of a cfers. Keep fighting!


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