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.