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Breck's Thoughts: Chronic

Tuesday, July 13, 2010

Now I understand why when Bennett's NICU doctor, Dr. Guo, told me about Bennett's confirmed diagnosis, she said, "I'm sorry."

I'm believe she knew how devastating this diagnosis was.  Even though I didn't fully grasp it at the time.

I imagine that her "I'm sorry" wasn't only for the limited life span he's likely to have...or for the treatments he would have to endure...or for the hospitalizations he would have to experience...

I think her "I'm sorry" was for more.

And that more is what I am experiencing these days.

Many people, especially those with children with CF, told us shortly after Bennett was born that Cystic Fibrosis is disappointing but not devastating.  They told us about their children, or people they know who had gone on to live a normal (sometimes longer than normal) life, with very few complications.  Their desire was to encourage us and help us see that CF is really not that bad.  We hoped they were right.

But I think I've set myself up to be let down.  For the past 9 months, we've move from one crisis to another - each time thinking that once over, life would be back to normal.  We were prepared for a new normal, one slightly different but pretty much the same.  We were prepared for giving our son medication every time he eats and giving him daily treatments.  This is like our life, just slightly more complicated.  We were prepared for that.

But we are learning that CF does not affect everyone the same.  And there is practically nothing that gives us any indication on how CF will affect our child at a given time.

Most children with CF do not have a bowel perforation at birth.  Most don't have surgery within 24 hours of birth and have to be in the NICU for a month.  Most don't have an ileostomy and have to go back for surgery for a reanstamosis.  Many do not need feeding tubes for several years, giving them plenty of time to establish their eating habits.  A majority of the time, rectal prolapse is not an issue.

We were not prepared for the constant high levels of stress that comes with a child with a chronic illness.  We had no idea how much CF would turn our lives upside down.

Issues with pain, troubles with feeding, high liver enzyme levels are just some of the things that have been on our plate for the last few months.  And just when we feel things get better, we find a new problem has arisen.  It's like we're playing the local arcade game "Wack-A-Mole."

We are still getting used to the word chronic.  And we are having to settle into our life - one that does not look like many other lives, including other CF lives.

We are hopeful that Bennett will eventually move from having a CF dominated life to one where CF is merely a thought it the background.  But at this point, we are not there yet.  And we are having to come to some type of acceptance that this may be our issue to deal with for a long time.


Chronic: constant, continuing a long time ore recurring frequently, having long duration.

On the way to the doctor yesterday, feeling completely defeated and exhausted from simply caring about all of this stuff, I turned on Oliver's music in the car - for me.  I wanted to hear the beautiful rendition of the preschool song "My God is So Big" on a CD I recently bought for him.

The words, which I learned as a child, are: "My God is so big, so strong and so mighty, there's nothing my God cannot do."

I thought, in that moment, about my feeling of weakness and my inner plea to give up on all of this hard work and emotional stress.  I'm tired of it.

But I listened to those words and felt like a little girl again.  My God is so big.  He is so strong and so mighty.  There is nothing my God cannot do.  But as an adult, I can add the caveat to the last part of that son, "there's nothing my God cannot do...unless he decides not to."  

Of course, I'd really love it if my big, strong God would take away Bennett's disease all together...and I do pray that at times.  But on this day, in this moment, my focus was not that.  It was that my God would just take over for me.  I'm tired.  I'm done.  I just wanted God to take over the stress.

My God is big.  He is strong and mighty.
There's nothing my God can not do...

...unless I won't give it over to him.

And so, in that moment, I gave it over.

And today, I'm giving it over again.

And tomorrow, I'll probably need to give it back over once more.

And the next day.

And the day after that.

Bennett's issue is chronic.  But, ironically, so is mine.

4 Responses to “Breck's Thoughts: Chronic”

  1. Praying for you guys - for strength. We're here for you. Thanks for sharing your honest thoughts on this journey you guys are going through. I know it's a long road ahead with hills and valleys. And you are right - God is there for you every step of the way.

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  2. Before I even read your post, just clicking on Bennett and waiting, I prayed for him to have a good day today and to give you and Brian the strength to deal with ALL you have to deal with and to strengthen your marriage. I'm truly praying for you all. After reading your post, I nearly cried, because God knows we're all praying for your needs. He knows what your needs are! God is so GOOD! Love, Ms.Ann

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  3. Blessings to you and your family. I have been following your blog for a while now and am encouraged by you. This is an awesome fight to be the parent of a child with CF! But as you so clearly were reminded (by our loving Father) we need to give it to Him. I too, struggle with this almost daily. We are about to celebrate our child's 5th birthday this week. It seems like we have engulfed with CF. Only another cf mom can understand this heavy load. Just know that we have said a prayer for your family today. God is good, all the time and all the time He is good, even in the midst of the very real and difficult struggles we face daily in caring for our little cfers. Blessings to you.

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  4. Well said. Keep the hope that, with or without a cure, he may have a normal lifespan. Certainly with a cure would be better, and being half dF508, that's good.

    Well said, again. I think I could say it a few more times. Just hold onto what you said here:

    My God is big. He is strong and mighty.
    There's nothing my God can not do.

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