Thursday, August 2, 2012

During our morning drive, I couldn't stop watching Ty through the rear view mirror. He is just so beautiful.  He looks so good, too!  I was picturing the baby that he was before cancer, and was in awe at the big, almost-five-year-old boy in the reflection today.  I am the luckiest person alive because I am his mommy.  He is the love of my life.  I could stare at him for hours and hours and hours.  Please pray that he stays with us, that he remains cancer-free forever and that he fully recovers from all the brain trauma he has suffered.  Like I said the other day, the sky is the limit!

As thankful as I am to have him, I am also so sad all the time.  Always so sad because of how unfair all of this is.  Our whole family has been robbed of so much, even Gavin.

Lou and I wanted to have our babies close together so that they would grow up close.  We wanted them to be the best of friends and to enjoy growing up together.  These pictures were taken in the Spring of 2010.  When life was perfect, but I didn't realize it. 




I don't think Gavin even remembers that his brother was ever able to run around and play with him. He doesn't remember all the fun they had. All he knows is that Ty cries a lot. That Ty has a lot of appointments so his Mommy will be gone all day. That Ty gets a lot of attention because he's always sick. That Ty sits on the couch and watches TV all day, every day, because he can't do much else. When he wants some extra attention, sometimes Gavin takes one of Ty's buckets and pretends he is throwing up. That is SO NOT NORMAL and today I am upset about it.  This was not supposed to be our life. 

I don't want to complain.  That's not why I created this website.  Instead, I should be sharing updates on Ty's journey, so here is the best one I can think of (and it's a really good one!):  Since March, Ty has been so weak that his voice was very low.  He simply didn't have the strength to speak any louder than a high-pitched whisper.  It was also very difficult to understand him because of the very low muscle tone and decreased oral mobility/coordination.  We used to get so upset with one another whenever I was driving somewhere because he would try to tell me something but I couldn't understand (especially because I couldn't turn around to read his lips).  I would beg him to stop talking to me until we got to where we needed to go be, and that would hurt his feelings so much.  It was torture.

Over the past couple of weeks, however, he has improved in leaps and bounds.  We have the cutest conversations during our commute, and I don't need to see his lips moving to understand what he is saying.  We play a lot of "I Spy" and he tells me funny stories.  I especially love it when he tries to sing again :)  He is very slow with the lyrics, but he is proud and he sings "twinkle twinkle little star" as loud as any other preschooler.  It's the most beautiful sound in the world. 

Thank you, everyone, for all of your positive thoughts and prayers.  Ty is getting "bedda" by the grace of God and because of all of you.  XOXO. 

6 comments:

  1. You sharing Ty's life is a gift to all of us. He is such an inspiration. I think it's so normal to feel sad at times when thinking about what could have been or what Ty is missing out on. The thing that I admire about you though is that you always find the bright side, the positive side to his life and that's a wonderful thing. This never should have happened to him there is no reason on earth why he should have to go through any of this but thank god he has you and your family who love him so much. He seems liek such a happy little boy and that is a tribute to all of you.I pray for his continued improvement. I can't believe how far he has come. It truly is amazing. I'm sure it's hard to focus on the positive all the time so give yourself a break when you want to feel sad once in a while.

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  2. YOU HAVE EVERY RIGHT TO COMPLAIN - if you can't vent here, where else can you. No one expects unicorns and roses from you all the time - I would imagine most people reading this blog and following Ty's progress would completely understand if from time to time you guys need to get something off your chest and no one will hold it against you. What you guys are going through is the most difficult unfair thing in the world - I wish I could snap my fingers and make Ty all bedda and that all of you could be better. It's great news that Ty's voice is getting stronger and that he is making progress with his PT. Stay strong and know that we are all praying for Ty and for all of you, every day!!!

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  3. ps glad to know I'm not the only one that stares at her kid thinking they are the most beautiful thing in the world....every day I stare at my son and my heart just melts knowing he's mine :)

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  4. Hoping Ty gets better soon with all my heart! Keep on pushing! :)

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  5. It's OK to vent as well as share news! We all want to hear how you are doing too. You deserve to blow off some steam and share your true feelings. Love you.

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  6. You are a wonderful mom. God Bless Ty and his family....you are an inspiration to me....Your family will be in my prayers...

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