If only there were more hours in the day. If only I had more patience, and if only I had more energy. Maybe I could be doing better then I am. I do not know.
I do not have cards mailed, I do not have presents wrapped, I do not have everything purchased, I am losing my patience with everything, and I am just worn out. Really there is nothing noone can do, thank you all for asking. What I need is for Wesley to be healthly and I need none of my kids to have Chiari. Well, I guess the reality is not that. Most days I can get past this, today may not be one of those days. I just can not make myself do much.
I think how nice it would be to just sleep until Wesley has surgery and until Kyra has tests ran, so I know what is next.
But on a good day, I realize how very blessed we are. I have to keep telling myself this. We are blessed by God and so many other people. Wesley and Kyra could be so much worse.
I just find myself angry. I had came to the reality of Wesley, I could deal. I thought we were going to New York for good news! And, then in one breathe everything changed again now my daugther has Chiari. The focus changed. I will never forget the look in Wesley's eyes. Some part of me thinks he blames himself. Even though it is not anywhere near his fault. I just have some angry. Not at God, not at anyone, I am just mad. I will get past it. I will come to the reality of what we have to focus on with Kyra as well. And, let me say like I have stated before, a lot of good did come from New York, but I would had never dreamed we would come back knowing Kyra infact does have Chiari. I was not ready for that!
What we learned yesterday is she does FORSURE have Chiari. Infact it is worse then we thought. When you put it in size terms. She also has a Pituitary Problem. We do not know the details on this yet. It could be mild and just need medication or she could need surgery. As far as the Chiari she will need surgery, we just do not know when. It may can be put off for a long time. Very very invasive surgery, especially on a child. I do not know what is next. All I know is we are being referred to a neurosurgeon at Children's Medical. I am sure it will be after the hoildays and Wesley's surgery before we know anything.
My goal right now is to focus on Christmas and making it the best Christmas ever.
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2 comments:
Hi! I came across your blog and wanted to wish you strength and faith as your family travels on this unexpected road. I, like you, do believe that everything happens for a reason, even if it's hard to look at our precious daughter's faces and believe that. Hang in there, you are doing a great job :)
Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!
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