28 December 2011

Running as hard as I can to stay in place.

We had a wonderful Christmas with family.  Hospitals, I have decided, are the.very.most loneliest places  So, I am incredibly thankful that we were discharged after one night and were able to go home to spend Christmas with family.  (I will post Christmas pictures soon.)

But, you know how they say, "If you don't have anything nice to say, don't say anything at all"?  Well, I've been trying to stick to that...with regard to my relationship with Cystic Fibrosis.  But it's very hard to do.  After numerous hospitalizations and multiple surgeries, all complications of CF, I have hardly anything nice to say about this evil disease.

I think that I am just so.tired.of.caring.  There is much much to care about with Cystic Fibrosis, especially when one's CF has alot of complications like Bennett's has had.  And I'm just so tired of caring about them...

I'm tired of caring about his rectal prolapse - did we fix it? will it stay fixed? how will I potty train him with this history of rectal prolapse, will it only irritate it more?
I'm tired of caring about his C.Diff - will it come back? is this what caused his rectal prolapse? is this why his diapers are so stinky?
I'm tired of caring about his lungs - is he junky? are they crackling? is he hiding pseudomonas?  will that runny nose/cold/cough turn into something worse?
I'm tired of caring about his medicines - which ones did I already give? did he get them on time? did I remember to refrigerate? do I need to reorder?
I'm tired of caring about his therapies - are they working?  is he with the best therapist he can be with? are they working on the right things? does he need more or less?
I'm tired of caring about his doctor appointments when is his next appointment? will they be unhappy about his weight?  will they add a new medication? will they want to admit him? 
I'm tired of caring about his enzymes did I bring them? has he had them? is it enough? are they working? what if I forget to give them to him?
I'm tired of caring about his eating - is he eating enough? is he getting the right types of foods?  is he pocketing his food? is he chewing correctly? could he accidentally choke?
I'm tired of caring about his g-tube - is he getting too much food by g-tube? what if the g-tube falls out? could he strangle at night in his gastric tubing?
I'm tired of caring about his weight is he gaining?  is he too skinny?  is he getting enough calories? will his lack of weight gain stunt his height?  

I'm just so tired of caring.

I'm running as hard as I can to stay in place.  Working hard to not move at all.  And yet, the inertia is incredible.  I am very aware that, without a cure, Cystic Fibrosis is going on win out in the end.

I am desperate to hold on to however much normalcy we can keep for now.  But the havoc this disease is reeking on my son has not gone unnoticed.  His tummy holds a g-button.  His abdomen sports a huge scar.  Parts of his colon and small bowel are missing.  Our kitchen cabinets overflow with medications.

But how do mothers who love their children not care?  
To not care seems like only giving up.

I work hard to get breaks.  Breaks during the week.  Breaks from the kids.  Breaks with friends.  Breaks with my husband.  But, somehow, that doesn't really seem to relieve the inner turmoil I often feel.

Because I carry it with me.
Deep down inside.
A sense of hopelessness.

I'm weary, feeling as though I am running as hard as I can...
...just to stay in place.


  1. Thanks for the being the voice of all cf moms! What a great post that puts our cf mama lives in perspective for others- It nearly brought me to tears but I too can totally relate to many of your struggles daily. Hang in there. Bennett is doing "well" because you are caring so much....

  2. I love you, girl. I need to send you an email I received today....

  3. You are not alone. Taking the time to write how you feel is so incredibly powerful. You are allowed to feel everything you are feeling... it is so normal and I know so very many moms who feel the same way. You are amazing. You are doing your very best. What sucks is CF is so damned mean. Your caring is awesome, overwhelming and helping Bennett in so many, many ways.

  4. I've been following your blog for a while now, and am finally telling you how much your words move me. You are so honest, yet eloquent. When I read about your struggles, my eyes fill with tears. It just isn't fair.

  5. I started a post much like this recently. That fatigue is at times crippling! I have just started my CF fundraising process for this year. One of my dear friends cautioned me with being weary from the fundraising work. While I understand what she meant, unless you are a mother of a child with CF you have NO IDEA how exhausting this path is!! The fundraising part is hopeful. Hope that someday soon life won't be so hard for our kiddos! It is the daily grind that is overwhelming. Then to know that despite all of the work...CF in it's current form, will still eventually win is devastating!!

    Thank you for sharing your heart, and yes, my heart heart aches...but we will preserver. Genesis 50:20 What you intended for harm, God intended it for good to accomplish what is now being done, the saving of may lives. Not only our little ones, but the many that see the difficult journey that we travel and see the light of Jesus in and through it. Breck, I see Jesus in you. Hang in there friend! Love and hugs to you!


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