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.
Tuesday, April 5, 2011
gold medal please
today i feel like i deserve a medal, after all the shit we have been through the last couple of weeks. where are the medals for the parents. I feel like i am on constant high alert. I have to remember dozens of appointments, not get pissed off when everyone is running late, i have to explain it all to my four year old son and his siblings in a way that's not scary but truth full, i have to hold him down for procedures that he doesn't want or are pain full, i have to remember absolutely every thing about his medical history and have instant memory recall when asked a question by a Dr or nurse, have to entertain a four year old confined to a room and sometimes hooked up to things, have to make sure he wears his helmet all the time, soothe him when he can't sleep because of it, help him figure out how to itch his head while wearing a helmet but staying away from the stitches, i have to keep a relationship going with my other kids that i am separated from, and still have a working marriage so i think i and other mums deserve a god damn medal. having dinner with some other mums at the Ronald McDonald house we all share stories about why we are here, how long for. we all think i don't want to do what i am doing but i am not as bad off as you, so i don't want to do what you are doing either. we are all here for different reasons some ones 6year old son has a brain tumour, her son has a heart problem as seven weeks old, their child is burnt and it just goes on, but we can all still feel each others pain. we know that none of us want to be here but we are all here for the same reason for the love of our kids and we would and do sacrifice everything for their health. there is no stronger love than between a child and a parent and no time is it ever needed more than when there's a health problem. we all deserve medals, some one bring out the medals, you don't need to fly the flag or play the anthem but we all deserve to feel like we are the best for we are the doing our best. no silver or bronze here just gold medals for every one.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment