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.

Hospital Days 9-11

Friday Day 9

I've really noticed a huge difference in Tyler's attitude. He seems so happy and calm. At the beginning of June, before we switched to UNC and started IVs, Tyler's attitude was almost unbearable. He was angry, impatient, beside himself, defiant and miserable. On the surface it looked like Tyler had a nasty attitude and needed discipline. I knew not to judge that book by its cover. I cannot imagine how it felt to have pneumonia for 7 months, to feel like crap day in and day out. To have my body starved of the nutrients it needs to stay alive when I'm well, much less how it feels when I'm sick and weak. To have to go to school and be expected to perform like a healthy child, to be judged with an "I don't care attitude" when I'm fighting for my life. To have my teachers send notes to my mom that my work isn't done, that I'm falling asleep in class and that I'm always forgetting to bring my pencil and the right book to class. To have so much pressure on me to pass my EOGs and then I fail them BOTH and have to be crammed with information for an entire week to retake them.... all the while struggling to breathe, fighting to make it through each day because I'm exhausted from my lung disease. Did I add the fact that I have to get up at 5:30am to do my treatments and then I'm up late to finish them before bed? 

I think... given the circumstances, I'd have an attitude too! It's really nice to see a smile on Ty's face again.

Saturday Day 10

Today Bran, Me-maw, Papa Dale and Chip came to visit with us again. Me-maw stayed with Ty while Papa Dale, Bran and I went to Target. I really enjoy spending time with my daddy and my son. Those two love to argue and they are so funny together. I got Ty a Nurf target set and 2 balls that we can throw around the room. Bran and Ty both had a blast shooting Chip and Papa Dale! In no time they had already lost a bullet!! Chip brought the Wii from home and set it up for us.  Let the games begin!!!!

Sunday Day 11

Today we had a great day playing the Wii together. Ty introduced me to a bunch of games that I've never played before. Turns out he's a great teacher!! The doctors are noticing a difference in the way Ty looks and acts. They feel like things are turning around and Ty is well on his way to getting better. We are blessed.

Ty wouldn't touch the hospital food today so I decided to go out and get us both a sub. I got a shower, fixed my hair, put lotion on to hydrate my skin and to make me smell good. 

I felt like a million bucks!

I had a pep in my step and I was ready to conquer the world again.

I got in the van and exited the parking deck and started my exploration of Chapel Hill for a SubWay. Somewhere from left field  a wave of sadness and grief suddenly consumed my spirit. I felt vulnerable and not ready for the not so bright days our future has to offer. I began to realize that I'm associating sadness and grief with the smell and presence of being in my van. Doesn't that sound crazy? Maybe its from the thoughts and feelings I experience while going back and forth from home to the hospital?? For 2 months the only time I've been in my van is when I'm on the road getting Ty to a doctor's appointment, or driving to the pharmacy to pick up his medicine. My heart pondered if it would be like this in the end. If I will associate certain smells, places and times with Tyler and experience that wave of sadness and grief. 

I tried to snap out of it and I was confused as to where all of this came from. How can I go from being on top of the world for a few hours after months and months of worry and stress, only to come crashing back down on a trip to SubWay. Perhaps it was a product of being alone and by myself, temporarily away from the hospital. I don't know. I'll try to figure all of that out later. Right now its time to get back to Tyler and to enjoy him and his smile.