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.

Monday, July 19, 2010

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. 

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