Friday, March 25, 2011

Facing the day

Today was a day I could've laid around all day. One of those days when you didn't really want to face the world and all that was happening around us. You know what I'm talking about right? Staying in your pajamas, no shower, no makeup, no seeing anybody.. Yes, after yesterday I could have had that day.

Yesterday we went to Pittsburgh for Lynlee's appointment. I usually dread these appointments due to all the traveling, the waiting, etc. I was especially dreading this one because on Tuesday I had got a phone call from the transplant team wanting to get Lynlee an evaluation. I wasn't prepared for this, and I knew this was going to be the topic we were discussing yesterday.

Of course I was right, but it wasn't as bad as I thought. We met with the doctor and came to the following understanding. We are going to get Lynlee's evaluation done, but we aren't listing her. We are giving her a few more months to see how she does. At the age of two kids stop growing as much, and it's harder for UCD kids because they aren't using that protein to grow. Some kids get really "sick" when this happens. Due to Lynlee's past up and downs we really don't know if she will make it through this with stable levels. So we have to be prepared.

I've come to a place where I know my team knows what they are doing. And I know the minute they tell me we have to get her on the list, we will. No questions asked because they've done all they can do to keep her stable. Don't get me wrong. This isn't a good place to be in, but I know I have to be comfortable with every decision made because there is no going back no matter what the outcome may be.

So knowing all of this I didn't just lay around today. I got up, got dressed, and faced the world. If I do nothing else for the rest of the day, I've accomplished something.

Friday, March 11, 2011

"I Love You"

I don't know much sign language. Just what I pick up from Lynlee's therapist when they stop in. One of them wrote down a website for me that has all of the signs and can teach me how to sign properly. I go to it time to time when I think of one that I really want Lynlee to pick up.

Today I was walking through the house and thought I need to double check myself on "I LOVE YOU." I wanted to teach Lynlee how to say it. Then I stopped. I don't need to teach Lynlee how to say I love you, when she shows me everyday. Every morning when I go get her out of her bed and she is soo happy to see me. She loves me! When she hugs me for no reason, or comes all the way across the room just to give me a kiss, she is telling me she loves me. Every single night when she won't go to sleep without kissing me and Ryan, she is telling us she loves us.

Yes, we need to tell those of us we love that we do love them. But more importantly we need to show them because even those times we forget to say it, they always know it from the way we show them.

I will teach Lynlee to sign I Love you, eventually.

Thursday, March 3, 2011

What's in a Song?

I used to listen to music all the time. From the minute I got into the car until I reached my destination. When I was working out, getting ready of a morning, cooking, cleaning, etc. Somewhere along the line I lost all of that and I miss it. I don't know if it's because I don't drive very far these days and if I do Lynlee's movies are always playing in the back seat. Most days I don't even get ready and when I do Lynlee is in there keeping me busy, same with me cooking, cleaning, etc. I won't even mention my lack of working out, even though I do Love the Zumba music in class :) But I don't have that silence I used too, and I don't miss that. I love the fact that Lynlee is babbling something in the back ground.

I'm amazed with out music touches us. Whether it's the song that we pick when we get married to the song that soothes our babies to put them to sleep. If we want to feel happy or sad, feel better or worse there is always a song that will do.

Ryan and I walked down the aisle to Me and You by Kenny Chesney. I smile when I hear that song because it's so perfect for us. I laugh when I hear the song "All I want to do" by Sugar Land because I know how much my sister hates it. I find myself singing it more loudly than I would just to annoy her even though she isn't there. I cry when I hear the song "I loved her first" by Heartland because I find myself praying that Ryan will get that moment with Lynlee. I could go on forever with the way songs make me feel. Even in Zumba the other night I looked at the girl beside me and said, that song makes me want to take a shot of something. HAHA.

Lynlee has always loved music. From day 1 when we would go lay down for the night in Pittsburgh we would leave music on for her. She has a lullaby machine that she (or I) can't sleep without now. The other night she spent the night with Ryan's parents and I found myself turning it on just so I could sleep. She loves the Itsy Bitsy Spider and does her own motions to it. We do "If your Happy and you know it" for hours and just switch up the motions. We clap our hands, scratch our head, praise God, etc, etc, etc.

After writing this I've realized I'm not really missing my music. I've just changed my preference of the tune.