08 December 2010

How CF has affected Oliver, part 1

Cystic Fibrosis does not just affect the one affected with CF. Cystic Fibrosis, or any chronic illness or tragedy, affects the dynamics of the family.

From the very beginning, we have worried over this. We have sought marriage counseling to overcome the initial challenges of our critically ill baby. We reached out to the Child-Life Specialists at the hospital to ask questions about how we can serve each of our boys best regarding our new life with Cystic Fibrosis.  We have tried to be as attentive to Oliver's needs as we have with Bennett's needs.

Our concerns regarding Oliver, specifically, include his feeling left out from all the attention Bennett gets due to his CF (from doctors, therapists, family members, friends, etc.), his not getting to do some of the activities his friends do (due to our desire not expose him to germs he might bring home - or due to our inability move around Bennett's therapy schedule), his struggling (later on in life) with the seriousness of Bennett's condition and the potential early death of his brother and his feeling (later on in life) that he since he's the "well" child he must solely "support" his parents emotionally.

We realize that Oliver is as much affected by Cystic Fibrosis, as is Bennett, in regards to our family dynamic - the very thing that will shape him into maturity.  So, as much focus as we put on keeping Bennett well and keeping our marriage intact in the midst of stress, we want to focus on keeping Oliver healthy.

Oliver, who just turned three, is becoming more articulate.  However, he has been unable to tell us how he has felt over the past year as we've dealt with Bennett's hospitalizations and concerns.  However, we knew, early on, that he knew something was going on.

Since coming home from Bennett's last hospitalization, there have been few changes in Oliver's life.  We have tried to keep life consistent and happy for him.  Bennett's therapists play with Oliver as well.  The nurses at Bennett's doctor offices offer Oliver candy and stickers.  It seems that, all things considered, Oliver has emerged unscathed.

But, as Bennett's issues have become more mundane, Oliver's more immediate needs have seemed bubbled to the surface...

The fact of the matter is Oliver wakes up screaming almost every night, something that started shortly after Bennett came home for good.  Our attempts to put him back down to sleep (encouragement, bribery, punishment) have all failed.  He will not go to sleep without one of us sitting within his view.   He has fought nap times, so furiously, to the extent that we've given in, believing that maybe at 2 years old, he just wasn't tired and given up trying.

Oliver has a compulsive need to touch his belly button (once a stranger noticed his playing with his belly button and smiled, "did he just find it?!").  Oliver is deathly afraid of being left without his parents, particularly me, his mother.  While there are a few people he will happily run off with, most of the time if he is being left (with the babysitter or his weekly Sunday School class, for example), he will throw a huge tantrum in an almost panic not to be left. 

Large groups are very scary for him.  His personality shuts down and he can almost become mute.  He once told us in Old Navy (as we were briefly shopping as a family) that he was, "scared of the people."  Not anyone in particular, just everybody.

When introduced to someone he doesn't know, in a situation he is not comfortable, he will often throw his entire body flat on the ground (as though he's "hitting the deck") and wait until the attention is off of him before standing back up.  It's clearly a way he's devised to overcome his overwhelming anxiety of meeting a stranger.

This has been on going for about a year - all since Bennett's birth.  In fact, we met with the pediatrician about his sleeping issues earlier this year (she thought they were probably just normal night terrors).  However, these issues have not gotten better, they have more or less gotten worse.

So, out of concern and that motherly-intuition-that-something-isn't-right, I reached out for a therapist who could help.  If no one could help him, maybe someone could help me.

After alot of phone calls and Internet searching, I came across a professor at Baylor who is well known in the child psychology field as an expert in "Play Therapy."  She has a graduate student who offered to work with Oliver if we were interested.

I met with her recently to discuss our concerns.  I was prepared for her to tell me that all of his issues were normal and that I was just being an overprotective mother. 

But, she didn't. 


  1. Wow, Breck, I had no idea all this was going on with Oliver. You have your hands full! So glad somebody else reaffirmed that they could help him because there seems to be more going on with him. It's posts like this that make me wonder if having more kids would be shelfish of me because it clearly affects everyone. Ugh, I just hate this disease.

  2. Thanks for being honest and sharing how CF affects your family. We are only a family of 3 but hope one day to add one more. This does show the reality of how CF affects the WHOLE family. It gives us all something to think about....keep us updated!


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