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Posted Jun 01 2010 12:00am
Yes that is the word for the week, frustration. Just when you think you have life figured out something else happens. I've received several e-mails asking if I am ok, or why I have not been blogging as much? So here is the real answer.
Since Phoenix has been born life has changed, we entered a world that was unknown to us. A world that sometimes scared others away or caused others to pretend we no longer exist.
What is sad is we have these amazing children. These children that don't have CF that are now being punished for something their brother has no control over.
None of these people know how smart these kids are, and I'm not just saying that because they are my children. Nikki is starting nursing classes. Willy got all A's on his report card and was on student council. Ryker scored a 95% on his state Math testing and received the Thank You award for the second year in a row. (He's the only child that this award has ever been given to!!!) Miclan is reading like a 1st grader and completed all her tasks for girl scouts. Emma has been accepted into a new preschool.
We lost a lot of friends due to them not understanding this disease, but also gained some new and amazing ones.
It's hard for others to see such an awesome little boy that looks great one minute, but is sicker than a dog the next. It's hard for them to understand that, "he will never get over this." It's hard for them to get close to a little boy that has a terrible disease with no cure.
So I go on day to day with a smile on face. When people ask how Phoenix and the other children are doing I say great, no matter what is really going on. You see the one thing I've learned is that nobody really wants to know how things really are, they want you say things are great no matter what.
So I am frustrated. I am tired. I feel 100% alone in all of this. (Please don't get me wrong I have a wonderful husband, but sometimes you just need a good friend to talk with. To cry with. To tell how truly helpless you feel.)
People that pretend to be friends are only there when it's convenient, but when things get tough those are the people that run and hide.
I live this 24/7. This is my life.
So I must say I am tired of smiling when things are not ok. I'm tired of pretending that the cough that my son has does not bother me. I'm exhausted at the thought of getting out of bed and attempting to make it through another day.
CF is a part of my life. It's a part of this wonderful little boy that we have been blessed with. CF is just that CF. It is not who we are or what we've turned into.
So how are things going, truly. Phoenix has developed a terribly deep cough. We've had a few nights that he's had to go back on oxygen due to not being able to keep his sats high enough. His eating has decreased and he is as pale as a ghost.
But did I tell you about his amazing laugh. A giggle that makes you smile every time you hear it. Have I told you that he's gotten great at blaming other people for everything, because we all know that Phoenix does no wrong! ☺☺☺ He loves going out to his garden and finding all the new things that have grown. He chases Sherlock around the house and steps on his ears whenever possible. He's a two year old little boy with a mind of his own.

Sorry for the rant, but I didn't want everyone to keep worrying. I'm ok, just trying to figure out life.

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