17 August 2014

One thing about CF I forgot to mention...

"Hi Breck, we have a problem with Bennett" was how the conversation started out.

I've heard these words twice before from a teacher - once when the teacher had to call me when Bennett's g-tube was accidentally pulled out by another student in preschool and once when the principal had to call me over concerns Bennett had something protruding from his bottom.  Turns out, this time, it was regarding the second.

Although I thought that I had explained everything Bennett's new Pre-K teacher might need to know with regard to Bennett's CF care in the classroom - enzyme dosing, his need to stay away from coughs and colds, his tendency to be overheated - I completely forgot to mention possibly the most distressing thing for anybody caring for Bennett: what to do when his rectal prolapse comes back.

This is Bennett's teacher, Ms. Borg.

On Friday, while Bennett was on the potty at school, his rectum protruded from his bottom (this is what is referred to as rectal prolapse, a symptom of cystic fibrosis).  Bennett's rectal prolapse has been a problem that has been long addressed by his pediatric surgeons.  We have had several hospitalizations and a surgery due to this issue.  In fact, just a few months ago, I brought Bennett in to  make sure everything was still ok with it.

While Bennett is continuing to have minor issues with his rectum protruding regularly (although, not often), the surgeon explained she did not see a need for it to be treated, as long as it is returning to its normal place inside within a reasonable amount of time (about 30 minutes).

At the end of the 2nd day of school, I received a call from Ms. Borg, Bennett's teacher.  She seemed concerned about what was happening.  I tried to evaluate whether or not I needed to come up to the school to get him or whether it was just "Bennett's normal."  I ended up realizing it was ok so I reassured Ms. Borg that once Bennett was no longer trying to strain on the potty, his rectal prolapse should resolve itself on its own but that, if not, she could always just "push it back in."  (I can't imagine what that might have felt like to have heard on the other side of the phone - ha!)

A few minutes later, I received a call from the school principal who had heard about Bennett's rectal prolapse and had wanted to just check in with me.  Dr. Blake has been the boy's school principal since we started St. Paul's and I have a great respect for him.  He is incredibly supportive of our efforts to care for Bennett.

Dr. Blake and Bennett, Summer 2014
While on the phone with Dr. Blake, he said something to me that will always stay with me.  I was apologizing for the challenges that Bennett brings to the classroom when Dr. Blake said, "Parents often think their child's needs are bigger than others.  But each child has their own needs.  These just happen to be Bennett's needs.  We are committed to Bennett and meeting his challenges.  We will do whatever we can for him.  We just need you to teach us."

As a mother of a special needs child, it was like water to my soul to hear such kind words.  I knew Dr. Blake wasn't saying that to be "nice."  He was saying it because he meant it.  And I know it to be true because it's evident that Bennett's school is made up of an amazing group of caring people who *are*, in fact, committed to him.  What happened next was just further confirmation this was true.

While I was on the phone with Dr. Blake, Ms. Nolan, Bennett's teacher from last year, apparently found out Bennett was dealing with rectal prolapse so, most comfortable with his needs as she was his teacher last year, she confidently walked to the classroom next door and volunteered to do what Bennett needed - to just "put it back in" for him.

Ms. Nolan and Bennett, 2013
It makes my Mama heart incredibly thankful to know that Bennett doesn't just have one teacher who loves him and knows how to care for him, but multiple teachers who do.  

I consider our family incredibly blessed to have an army of supporters at Bennett's school: teachers who care about him as a whole person, families who help raise money for the Cystic Fibrosis Foundation so we can get him a cure and a principal who means it when he says St. Paul's is committed to Bennett.

Thank you Ms. Borg, Ms. Nolan and Dr. Blake for being brave on Friday dealing with Bennett's rectal prolapse issues and being willing to continue to help him whatever tomorrow brings!!


  1. That's really wonderful to hear, Breck. It must feel nice to have that kind of support and love for Bennett while you aren't with him. My thoughts and prayers are still with you all. After all these years, you are still near and dear to my heart. - Jess

  2. I love this post! "Each child has their own needs." Some very wise words! I hope every educator my kids encounter has that perspective.


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