Description

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.

Showing posts with label birthday. Show all posts
Showing posts with label birthday. Show all posts

Thursday, July 22, 2010

No Place Like Home

We busted out!

      Flew the coop!

            Bid farewell!

                   We were released from the hospital and now we're back home!!


Hospital Day 13 (Tuesday)


Tuesday I woke up feeling terrible. I felt incredibly weak and all I wanted to do was lay down and sleep. So that's pretty much what I did... all day long!  The nurses stepped in and made sure Ty was well taken care of and had plenty of company.  I did manage to get up and play the Wii for a little while.

Hospital Day 14 (Wednesday)

Today was Ty's birthday! It was certainly one to remember! So many people came together and raised money to make Ty's wish come true.... to have a "PSP Go".  The generosity, love and support of complete strangers is mind-boggling. No matter how bad things get for us, there will always be so many other families that have it worse. One of my weaknesses is not acknowledging the strength, faith and test of endurance that our family faces on a daily basis. When people tell me that they could never do what I do, that I'm one of the strongest people they have ever met... I feel like I don't deserve that, that what I do is not extraordinary. To be honest, it hurts to think about it. When I make myself stop and acknowledge the struggle that we face and attempt to conquer each day, it simply brings me to tears. I don't want this for my life, I don't want it for my family and I certainly don't want to see my son fight to breathe.


I know with all my heart and soul that God chose me to be Tyler's mom.

He saw something special, something strong, unmoving, determined, spirited and able to carry the load.

WOW! God has high hopes doesn't he!!  ☺

I firmly believe that families of special needs children are hand-picked, chosen with purpose. I also believe that all of us possess the above characteristics and that sometimes they're only accessible through God's mercy and grace.

We are certainly no better than other families who take care of sick, elderly or disabled loved ones. There are  families who adopt children knowing of their medical conditions, people who voluntarily choose to care for the sick and disabled. All of these people are gifts sent from above. They too, I believe, are hand-picked for the task at hand.

My favorite saying, the one that helps me keep pushing is, "God will never put more on me than I can bear".  I also love the song by Kirk Franklin with this verse in it.

In closing I would like to thank the many people who give to causes that don't directly affect them. It is so easy to fight for a cure for Cystic Fibrosis when your child suffers from it, but how many of us would be so involved if it didn't directly affect our loved ones?

The people that reach out to help others in need, often times complete strangers, are also special, hand-picked gifts from God.

They are equipped with hearts so big, smiles so warm and arms so giving that no other source could possibly provide.

These are the people that I look up to.

These are the people that I hope to become.

These are the people that can touch a child and leave a lifetime of precious memories.

These are the people that humble us as parents.


Thank you for being such an incredible blessing to our family.

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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