My mission

Well, it's been about 3 years since I've last posted.  I had great intentions of keeping up the blog about Rylee, but it didn't go as planned.  These days, I have a new mission, Primary Ciliary Dyskinesia awareness.  A month ago today, my little girl was diagnosed with PCD, a rare genetical disorder that affects the ears, sinuses and lungs.  I have made it my mission to get the word out, raise awareness and hopefully funds for research.  I'm not doing this for just Rylee, but for all those children like Rylee, who fight for their breath more often than we realize.
For anyone who knows my little girl, you know she is a happy and carefree little girl who loves dancing and singing.  From the moment she was born, she has brought nothing but joy our lives. 
From the day Rylee was born, she has struggled and for 4 years we have fought to get answers for her.  She has suffered more in her 4 years with illness than many do in a lifetime.  She averages pnuemonia twice a year, in addition to multiple sinus infections, colds and coughs.  She has been hospitalized 5 times and as I read blogs and post from other PCD, I've realized this is minimal.  I look around at her therapies, treatments and medications, all I can think about is this is not the life I wanted for my daughter.  But as I look at her, I am reminded what a fighter she is.  Not only will she never have to fight this battle alone but that she will never give up.  She is so determined and brave and goes through countless procedures and tests, never complaining or showing an ounce of terror.  She is where I get my strength.
I'm not sure how any parents prepares themselves for things like this, if that's even possible.  I remember asking the night before her ciliary biopsy that she would simply make it through the anesthesia without problems.  I prepared myself for her having to be admitted if she had any respiratory problems, but she did great.  But never did I think I was going to hear the doctor tell us what he did--no movement at all in her cilia.  A thousand thoughts rushed through my mind and the tears began to fall.  I wanted to hold my baby girl and tell her no matter what, everything was going to be fine.  Everything my little girl has ever dealt with has all started to make sense.  I remember everyone saying, well at least you have a diagnosis and you know what you are dealing with.  But, I almost wish I hadn't had that diagnosis.  I'd had been walking around for 4 years, waiting for the day we'd wake up and Rylee would "outgrow" all her issues.  There was hope, something we could hold on to.  I felt like that hope was gone with this diagnosis. 
It took a while for it to sink in for Jeff and I, but we are ready to fight this fight together, as a family and do whatever it takes for our daughter.  We will stop at nothing to get her the care she needs, but more importantly deserves.  We ran though all the different emotions that I'm sure parents do in this situation and are still dealing with them.  I imagine something like this takes a while to make sense of and deal with, but our support system of family and friends have been amazing.

So, as I snuggle my little girl tonight, I remember how truly blessed we are to have her in our life!