It is so hard!

People have often asked how I am doing and to tell you the truth I just want to cry!  No there are very few people who know what it is like facing what I face every day but most of them are different issues since I don't know of anyone who has what my boys have.

You have no idea how hard it is to talk to these doctors and get as much info as you can and then understand that said info.  But when the doctors finally see the results and they can see how bad the results are... you still have to smile because you have your children right there and there is nothing that you can do about that but the doctors face drops into an almost grim face.  After going through what I have to go through I often tell people that I don't care, I also will tell people what I think most of the time if I am in one of my moods that let's me just get it out.  I feel like such a horrible person sometimes for being honest and mean with people, but heck the petty problems that they face compared to mine are so just that petty.  Yes I know that there are many people out there that have their challenges and I know it is hard for them, I understand.  I know everyone has problems and they are all different, and that is a good thing.  But when you ask for my opinion and you want me to be honest do be so put out if I don't tell you what you want to hear because I can only take so much before I just snap.

You have to understand where I am coming from.  We struggle everyday with just getting by not only with money, food, and everyday things but also with the health of our boys.  No we don't get help very often because we know of many people that could use it, and feel that they could use it more than us.

But man when we get the rug pulled out from under us so many times often I am ready to throw in the towel and say "screw you, I am done!"  How many times do I have to watch the faces of doctors drop and then have them tell me that they don't know?  I would love a straight answer for once instead of this I don't know, or we might be able to...

So Rhett asked me the other day when it was just him as me... "Mom if I pray hard enough and want it really bad and have the faith to get it will the lord give me the ability to fly?"
As I looked at him and tried not to laugh since I wouldn't have thought he wanted to fly, but then I remember he does love planes and wants to go on them more.  But because of fund not going to happen anytime soon...  I looked at him and said... "No sweetheart.  The Lord doesn't have the power to give you the ability to fly.  You see, people were not created with wings to fly on their own and that is why we have airplanes and not wings."
After he thought about that for a little while he said... "Well if I pray really hard and have the faith will the Lord be able to help get me off oxygen?"
As I looked at him and wanted to cry I said without crying..."Yes honey the Lord has the ability and power to help you get off oxygen.  It might not be the answer that you expect but he can do that if that is what you really want."
As I thought about that answer that I gave him I wonder if he really knows what is going on, I mean he is a smarty pants.  He even told the doctor that without oxygen he turns blue.

What would you do if you had to face everyday watching your child not breathe right and then find out and have the knowledge that the lungs of your child are not functioning the way that they are suppose to meaning that the lungs are slowly not working anymore?  How would you handle it?