inspiration

This week has been different. Instead of our situation ruling our life, I have decided to just let it go. God will work things out. I truley believe that whatever he wants to happen will happen. The past few weeks, I started following a blog, I just happened to click on from a friends facebook page. This blog, touched me. I found myself going back from the first day this wonderful woman posted about her beautiful boy with CF, and read it all. I smiled. I had tears. And I bauled. A week after I started reading her inspiring story, her son Conner man got his wings, and is now with our Lord. I can not help but look at life a whole different way, in MANY ways.
I read her entry about her last 24 hours with her son on earth. It touched me. I swear I am a new person. I could never thank her and her family enough for making it clear for me. Not just in one way, but in countless ways, but yet its so hard to explain just one of the ways they have touched me.
The touched me not only in a way that, we both have children with thier own adventures, but in so many other ways. So many insights, and they are thankful for SO much.
I have never ever met so many amazing, inspiring people until we started this journey with Kaesyn. There are so many kind people, so many people full of love, even if they have had the worst happen to them, they alll have turned it into something amazing. Ohhh I have never felt so much love in my life. They care. They check up on us, we check up on eachother. I feel as if all of these parents that are on the same mission, fighting for our children in one way or another are all a family. I had befriended someone amazing through all of this, and she even called me yesterday just because she could tell I was stressing about all of this.
As amazing as some of our Doctos are, some of them just dont get it.
They come in the room, they say what they read in the chart, maybe order this, see you in 6 months. I keep saying our July 7th appointment with the neurosurgeon is going to be life changing. Regardless of what he says, it will change my life, for the better, or for the worse. Im ready to accept that, in any way I have to. But Im tired of being in this grey area. Im tired of waiting. Im tired of leaving the hospital and being in tears because yet we know nothing. I am ready to move on. I am ready to begin a normal life again. How am I supposed to not knowing what is wrong with my son? How am I supposed to knowing that he may have something so serious?
I was recently asked by another amazing woman I know what my goals for the next 3 months are. As other people answered, typical goals such as "Saving $500.00" "pay off my credit card" "Get a new job" "Get a new car", ect ect, you get the point.
I had no goals, other than getting answers for my son. Finding new ways to cope with this. Im so tired. Im so drained. What happens when I leave that hospital and they say its another waiting game? I can not hear that anymore. However I certainly dont want to shunt him!!!!! That makes my heart hurt thinking about it. Where do I Stop fighting for answers? How am I suppose to start being okay with the waiting game? It overtakes me. It overwhelms me. Even though I have found many people through support groups, blogs, hydrocephalus organizations, I still feel alone.
We however do have a caseworker now, and she is going to our neurosurgeon appt with me, so she can hear what they say and translate it to me later. I seem to forget what the Doctors say when I leave the room. My best friend will also be there for moral support. Thank God for her. I am so lucky to have so many people in my life. Even though sometimes its hard to see straight through.

I did get to spend the day with my baby girl. It was so nice. It has been so long since her and I got to hang out alone. I have missed her. Its so hard to spend time, with her lately. She is so wonderful. We get t
o hang out all day tomorrow to. After her swimming lessons we are going to OCEANS OF FUN!! WOO! Kaesyn will stay at home with Grandma. I miss him when Im gone all day, but I really need to dedicate this day to Gabby, she needs, and I need it. They both make my world a brighter place, although she takes me to a different place than Kaesyn. That probably sounds horrible. I love Kaesyn with every fiber of my being (As I do Gabby to) but I just feel so much guilt for so many things. Its nothing he did. He changed my life forever.Gabby takes that all away for a little bit. I hope thats normal. I hope that doesnt make me a horrible person. Kaesyn lights up my life go, but I get so guilty. Its now time for bed I think. As Conners Mom Sarah says. LOVE LOVE LOVE! I will always think of them whenever I see the word love.Good night.