I am the mom of a 10 year old son with Cystic Fibrosis (Ty) and an 11 year old son without CF (Bran). This is my journey as I balance Ty's needs while giving Bran the love and attention he deserves.

Tuesday, July 19, 2011

Sharing the Reality of CF with Tyler

For the past week Tyler has made comments about wishing he didn't have CF.  He says he gets tired of doing his treatments and he doesn't like having to go to the hospital.  After our last hospital stay in May, he declared that he would NEVER go back to the doctor/hospital again.  Are you seeing a pattern? 

Yesterday Bran called me at work and said he didn't think Ty was doing his treatments.  I talked to Ty about this and he repeatedly assured me that all was well and he was doing his meds.  I then had him to tell me how many vials of Cayston he had left (yes, I counted them before I left for work in case this scenerio came up).  Turns out he had indeed NOT done his treatments like he said he did.  This was at 10am.  I demanded they be done immediately.  Fast forward to 1pm when Bran calls me at work again to tell me that Ty still had not done his meds.  I knew what had to be done, I knew the fight that would now ensue.

Chip and I had a reality conversation with Ty that night.  I showed him a CF video on YouTube to prove to him that he was not alone.  That 70,000 other people, worldwide, shared his discontent with sometimes hourly treatments, IVs, endless pills and tough hospital stays.  I explained to him why those kids had to wear oxygen, why their eyes were surrounded by dark circles and how they probably wished they had his lung function (which is in the 80's) instead of the nearly non-exitent function they currently have.  He saw the fear and raw emotion of a CFer who desperately needed and wanted a lung transplant, and the immense sadness and emptiness experienced by a family who recently lost their son.  Their son chose to forgo a transplant because he had seen so many of his friends have them and then still die anyway.

We then talked about the many CFers who defy the odds, who live life to the fullest, who do things that healthy people don't/won't do and who refuse to give up or give in.  We talked about future plans and being able to go to college, have a family and live to be old and bald.  We prayed together and spent time talking about the things that weigh on his heart and mind. 

How successful was all of this?  I have no idea!!  I guess time will tell.  I can tell you that today my heart is incredibly heavy and my emotions are sensitive and raw.  I feel like I'm in a fog and I question how well I handled it. 

Two things I do know for sure:  I need to have a deeper faith and I need to educate myself, spiritually, on how to handle, guide and lead my son with God's word before our next heart-to-heart.

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