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 Day 12

Monday Day 12

Tyler and I slept in today. I woke up with my back achy and sore. I'm guessing sleeping in this chair has finally caught up to me! ☺ Ty hasn't eaten much today. He has played on the computer ALL DAY. I gave him a hard time about that. He agreed that as soon as he gets to level 20 he's going to put the computer away and spend time with me. Isn't that just adorable?  

One of our nurses (Jackie) has started giving Ty a prize every time she has to stick him to draw blood. The last 2 times she has given him Silly Bandz. You know he just loves that!!  Well today one of the respiratory ladies was talking about her two daughters (ages 3 and 5). Ty told her that she could take all of his dinosaur bands to her two girls and to tell them they were from "Tyler". I was floored. He earned those prizes from needle sticks and had a big enough heart to share them with two little girls whom he has never met. The respiratory lady was speechless. She said she would be sure to tell them about Tyler and to let them know that the bands were from him. I'm a proud Mom!

So the waves of sadness continue to roll ashore today. Most of the time I manage to keep it at low tide but if I'm not careful the waves start coming in fast. I just kept looking at Ty today, hoping and praying that I won't be put in a position to not be able to escape these thoughts (or that reality) EVER. I forgot to mention that Ty's birthday is on Wednesday. Its a bit of a sting to be in the hospital on this special day. On one hand I'm shouting to the mountain tops that I've had Tyler another year... on the other its bittersweet because without a cure I wonder how many more of these he'll have. Of course the happy thoughts far outweigh the sad ones so I remind myself to smile and enjoy it.

It is my goal to get a book written by a fellow CF mom SOON! I really think it will help me sort, calm and understand these feelings and emotions. I am so tickled to be able to say that I've hugged and kissed my Tyler-Roo a bunch of times today!!!  ☺

Lung function is scheduled for Wednesday. That's Tyler's birthday and it may very well be the day that we go home!!!!!

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