15 February 2016

The continued push for normalcy.

Normalcy: we aren't there yet.  In fact, today, we made the decision that Bennett would not be going to school tomorrow afterall.

It may be another may be several more.  All we know is Bennett is on the potty most of the'd be safe to say that he goes to the bathroom no less than 30 times a day.

We had all intentions of sending Bennett tomorrow.  Today, since the kids were out of school for President's Day, I took all three children to the park (it's hitting 70 degrees these days in Texas).  I chose the park based on it's access to a potty. But what I didn't realize is just how little Bennett would be able to play at the park and how much of the time he would spend sitting on the potty.

Added to the stress of Bennett being on the potty all the time is that he wants me to be in close proximity to him (6 year olds get scared easily).  This is difficult because my other two children want and need my time as well.  And, even though Bennett can wipe himself, he still genuinely needs me to care for him as it's a sensitive area.

Speaking of sensitive, Bennett is still waking up in the middle of the night crying in pain.  So, just as we have begun feeling life is returning to normal in some small ways, being awoken in the middle of the night reminds us we are not there yet.

Brian and I had a good long talk tonight and agreed that the best place for Bennett is still at home. Even short trips such as to McDonald's for some one-on-one time with his daddy must be modified to Daddy going by himself to pick up a happy meal and bringing it back to Bennett...and even then, it means Bennett bringing in a chicken nugget back to the bathroom with him. "I have to go to the bathroom, Daddy" is what we hear all day.

It's so sad and it makes me so angry.  I'm sad because this is no quality of life.  And I'm angry because there is nothing we can do about it.  This resection of Bennett's colon was a major insult to his system.  It's going to take time to go back to normal.  And while everyone believes things will eventually find an appropriate resting place, nobody knows for sure when that will be or what that will look like.

Brian and I sat down with Bennett today to let him know we felt he needed to wait to return to school.  Bennett was looking so forward to school.  But he quickly agreed that tomorrow isn't the time.

Brian and I shared how we were concerned for the other students who would need the classroom potty and wouldn't understand why he was always in there.  And we shared our concerns that the teachers might be concerned about his residual pain.

Of course, Bennett reminded us "there's a bathroom on the playground" and "there's a bathroom in the gym" but we reminded him we want him to go back to school in a healthy place where he can focus on playing on that playground and gym, not finding the nearest bathroom.  He agreed.

Then Oliver began to cry.  He later pulled himself together and revealed he's jealous that Bennett gets to stay home and not go to school.  We reminded him that Bennett would prefer to change places with him in a heartbeat.  He agreed that not staying home on the potty is better, even if it means he has to go to school.  But it was an emotional day for all of us.

On top of that, I face a new challenge, which is figuring out how to get a break during the week to be able to do the things I need to do outside of the home.  At this point, Bennett can't come with me to the grocery store or to run errands as he his "need to go" is so frequent.  I have already reached out to friends who have recommended names of babysitters or nannies who may be able to help me during the week.  But it's an additional burden to now have to worry about - something I had thought as of yesterday wasn't even going to be an issue.

I cried with Brian today because it's embarrassing to have a child with bowel issues.  How do you explain to people that your kid's pooping issues are so disruptive to your life?  It just feels weird.  And, on top of that, I carry guilt that this is my fault in the first place.  If I hadn't agreed to the surgery, then maybe we wouldn't be here.

I have more to share about what the doctors think is going on based on our recent Cystic Fibrosis Clinic visit and about a wonderful surprise visit Bennett was given to our home on Friday afternoon.  But it may take me another few days.

For now, I must share that we aren't yet back to normal.


  1. What about a a Respite nurse? ((Hugs)) momma

  2. I just want to hug you a bunch and sit with you and listen... and go out and buy you groceries... and so many other things. I'm sorry I don't live close by to support you in person. But please know I'm thinking of you often. Thank you, as always, for writing so honestly.


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