It's crazy when I sit back and think how far we have come in the last 3 1/2 years. The first year we fought to keep our head above water. The second year we researched to figure out this terrible disease. The third year we continue to struggle to understand as new health issues continue to rise up.
With CF it is not just the person with the disease that is affected, it is the entire family. Our older children watch what their brother goes through everyday and it raises questions within themselves. Phoenix struggles to understand why nobody else has CF. He has been asking a lot lately, "When Daddy gets little like me he will have CF" or "When Emma gets my age she will have CF." I can not even imagine what goes through his head everyday. The thoughts he has seeing his siblings carrying on with life while he has to stop and do treatments. People tell me that he does not know any different, this is all he has ever known. Yes, that is true but he is smart enough to see that this big word that he struggles to say plays a big role in his life.

I hear all the time, "But he looks so healthy." If people only knew...........