Sunday, December 20, 2009
Baby Briana Hayes
You know I've been having a bit of a hard time lately with Kenny's diagnosis. I have pretty much come to the conclusion that he's going to be wheel chair bound and blind. I'm Ok with this. It's not that I've given up hope that he'll be fine it's just that I want to feel like I'm being realistic. His brain injury is called Cystic Periventricular Leukomalacia. PVL for short. I found a FB group on it. And hopefully I can get support from those families. And in all of these feelings of the unknown, I do know how lucky I am to have him with me. All four of my kids for that matter. Another CDH baby has earned her Angel wings. Briana Hayes. http://hayesfamily091308.blogspot.com/ I know how much these families would just love to have their children with them through out everything. It makes me then feel guilty for feeling the way that I do sometimes. Although in my mind I sometimes justify it that I'm allowed...but really am I??!! I know that I have been given the gifts of my children for a reason. I will always love them unconditonally. I just think that the unknown of the future scares me. I haven't had a worry like this one before. But in reality, these are MY PERFECT kids. Please continue to pray for all of the sick kids that we may or may not know.
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You know I have my down days too, my days where I get angry knowing my daughter was born "typical", knowing she should have been HEARING and not had to go through a CI surgery, knowing she'd be WAY more advanced if she could hear, knowing her shunt could stop working at any time and that if we don't catch it she could die! But then I just always try to remember that there are people whos children aren't with them and people who's children are a lot worse! That doesn't take away the pain and anger I have for a certain pediatrician, but it helps me to be happy for what I do have instead of what I don't!
ReplyDeleteBobbi,
ReplyDeleteThank you for sharing the Hayes Family with us. CDH is such a horrible condition.
I also think that while it's absolutely wonderful that we have our little ones, we, too are aloud to have "bad" days. It's hard having ill children...no matter what side they ultimately end up on. What makes things better are the support we get from each other going through this giant roller coaster ride together.
Hang in there, Mama! You are all in our thoughts and prayers.
Sheryl