Intentions

"He's so little." We've heard it for a very long time. We are not offended by it, but I used to find that I felt like I had to explain why he was little even to complete strangers who I would never again see. Well, I explained it to the best of my ability before he was diagnosed. "Yes, he is. He's not a great eater and it's something that we are working on with him."

Well, he is still small and I still struggle with how much information is necessary. We were at a friend's house the other day talking to some great people. One mom asked if he eats well. So I explained that he is fed through a feeding tube and that we try to squeeze regular food in there as much as we can. Well, obviously that warrants additonal information so I started talking about the disease. Then I felt like a downer and that I monopolized the conversation. Soon after that, Landon was due for his Cystagon which really needs to be taken as close to "on the dot" as possible. I stood in the bathroom preparing his meds and asked Jimmy if he wanted to bring him in the bathroom or if I should bring it out there. Jimmy told me to bring it out there and that "it's quick." So I did and it was no big deal.

Here's my struggle though- I want to raise awareness. I want people to know that this disease exists. And, I never ever ever want Landon to be embarassed or ashamed of his disease, or feel that he has to hide anything. I love that he lifts his shirt up to show off his belly as he gives his Mic Key button a quick spin (ok, that makes me nervous but you understand, right?). But on the other hand, I don't want Landon to be defined by Cystinosis. He has a disease, but that is not who he is. I don't want Cystinosis to be the topic of conversation all of the time because there is so much more to him. And anyway, besides the feeding tube and medication, he is like any 17 month old little boy. Can you understand my struggle?

On another note, at his last weight check, he weighed 17lbs, 10oz. Watch out!! We actually are not going to go back until his 18 month appointment unless something comes up before then. I did, however, change his feeds a bit in hopes that he may become hungry at some point and so that we don't feel as if we are a slave to his feeds every day. He is now getting fed 6oz every 4 hours instead of 5oz every 3 hours. So far so good..

And, to end this post, tomorrow will be 10 years since our beloved country was attacked. I pray for all of the people affected by this incredible tragedy. I will never forget where I was and how I felt upon hearing the news. Many things have happened in these 10 years- I met Jimmy only weeks after 9/11 and a new chapter of my life began but I, along with the rest of America, WILL NEVER FORGET.

I have to share this song. It will bring tears to your eyes. Be prepared!
http://www.thundertreats.com/articles/awesomeness/heaven-911-september-11th-2001-nyc-tribute-kluc.html