It's been about a year now since we have been diagnosied with cranio. That means 3 surgeries, 8 lots of antibiodics, 2 CT scans, x-rays, 5 special 3D photo sessions, brain testing, neuro testing, blood tests, 7 IV drips, hundreds of stitches in his head, endless appionments i am guessing about 50, 6 weeks away from home and family, endless trauma and many more things. That has been our year and it will continue hopefully slow down, but continue non the less. Mind you this is all for one boy who just turned five. And yet we have it so much better than some, we are able to get the help that he needed, we live near a captial city with a childrens hospital, we dont have to pay through the nose for his treatment, we are surronded by family and friends, even though we feel so alone we are not. Everyone always says look for the positive in things, but when your child is going through this, is there really a positive? I am scared that I am starting to get numb by all this. Worried I'm not feeling any more. Worried that i can't do anymore. And it doesn't even happen to me it happens to Denver. I am scarred I am going numb and i don't want to be numb, but I don't know if I can continue to feel so deeply, it is exhausting. Will I ever feel like this is over, that we are pass it. We go back on Friday to see the head surgeon because deni got another infection after they removed the infected part of his scar he got another one in the same spot. It has cleared now but WTF. I'm am also going to ask for genetic testing to see wheather this is gentic in our family or whether it was just bad luck. I'm doing this for a few reasons, so that we are aware if we need to be on the look out wih our grandkids and nieces and nephews, I have also been an egg donor and have a egg baby out there and I am hoping to be able to donate again but I want to know if this is something i could be passing on. To have an answer whether this is in our family. So we go back this week and it continues. Today I am tired.
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.
Sorry it's taken me so long to read this. Yes, of course you're tired. Yes I think there is hope that one day you feel that it is over, that you are way past it. That day will come. xx
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