Life is going aling quite well. All the kids are at school this year and every one is enjoying what this year is bringing them. Denver is really loving prep and looks forward to going each day, he gets tired easily so we just make sure it is within normal limits. We are having longer breaks in between appionments at the childrens hospital which is so lovely, I honestly dont know how we fitted them all in. His eye pressure tests are still borderline for pressure so we still have regular eye checks. Cranio is never far from our lives we are running into Denver wanting to do sports that I am not yet comfortable with. Denver is so very keen to play foot ball he even says mum its ok i will wear my helmet, the special one we need for me to play. But one year post op I am not ready. I am not ready for that, the risk just seems to great for me. I wish I had someone to ask who also had a boy one year post op that wants to play footy, but cranio is a lonely world especially when your child doesnt fit in the normal mould. Is it safe? I am not comfortable one year doesnt seem long enough, surely. So lots of discussions with Denver about playing or not and I think for me this year its too much too soon. Denver might be eager and ready but his mum is not, I couldnt do it, i couldnt risk it, i dont know if i could survive it. Am i holding my son back or am I justified in my fear. I wish there was someone to ask and go over this with, but no its just me and my fear and the excitment on Denvers face.
Our story with craniosynostosis. The good the bad and the ugly.
Welcome to my blog about my journey through cranio with my youngest Denver. I write this blog to benefit myself by getting my feeling out and hope that someone may read this and get an understanding about what we go through as mums dealing with cranio. Some people thimk the journey of cranio ends after the 1st cranio surgery but that is far from the truth, this is a life changing journey that goes on for the life of the child and their family. I often write things I would never have the courage to say out loud to anyone, often the feelings are very raw and honest. So join me on my roller coaster ride through cranio and lets get through this together.
Thursday, April 26, 2012
Life is going aling quite well. All the kids are at school this year and every one is enjoying what this year is bringing them. Denver is really loving prep and looks forward to going each day, he gets tired easily so we just make sure it is within normal limits. We are having longer breaks in between appionments at the childrens hospital which is so lovely, I honestly dont know how we fitted them all in. His eye pressure tests are still borderline for pressure so we still have regular eye checks. Cranio is never far from our lives we are running into Denver wanting to do sports that I am not yet comfortable with. Denver is so very keen to play foot ball he even says mum its ok i will wear my helmet, the special one we need for me to play. But one year post op I am not ready. I am not ready for that, the risk just seems to great for me. I wish I had someone to ask who also had a boy one year post op that wants to play footy, but cranio is a lonely world especially when your child doesnt fit in the normal mould. Is it safe? I am not comfortable one year doesnt seem long enough, surely. So lots of discussions with Denver about playing or not and I think for me this year its too much too soon. Denver might be eager and ready but his mum is not, I couldnt do it, i couldnt risk it, i dont know if i could survive it. Am i holding my son back or am I justified in my fear. I wish there was someone to ask and go over this with, but no its just me and my fear and the excitment on Denvers face.
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