I am feeling so incredibly ripped off and frustrated. In the middle of the year I applied for a holiday through a foundation for our family due to Denver's cranio and me feeling that we all needed a break and some time together without the cranio leading our lives. We were blessed to receive a week from the 18th to the 26th of Dec. It was a really big thing for me to leave my family at Christmas and go away but it was our opportunity to have our holiday and recharge and get some time together. I had wonderful images of us having a great relaxing time at the beach just hanging out not a care in the world. Well apparently that's not in store for us. My husband gets sick the day before when we are meant to be packing, so I continue to pack holding back tears in the hope that he will be better the next day. Day of leaving hubby is doing OK so we decide to go for it. We make the long drive have a wonderful evening on the beach and it all looks perfect, just what i wanted and just what we needed. Until the next morning Denver wakes up sick and spends the whole day sick getting worse as it goes on. He seems to settle a bit at the night until he develops a fever. We think OK a fever that's fine lets see how he is in the morning. He is worse really high fevers wont eat or drink cant keep any medicine down, we try everything but he slowly deteriorates as the day goes. So by dinner time i know that he is getting severally dehydrated and its time to get medical advice. He is also suffering headaches which i am sure is normal when dehydrated but when your child has cranio a headache is never a normal headache. So we end up spending a number of hours in the local hospital re hydrating Denver. WTF. I just wanted a nice relaxing holiday but instead we are dealing with this shit. I am praying so hard that no one else gets unwell, I don't know if i could take it. I just want to have a nice relaxing fucking time. I didn't think it was to much to ask a week without Dr's and hospitals and where do we end up on the 2nd day the fucking hospital. I feel so incredibly ripped off. I feel so sorry for Denver how much does one kid have to go through in a year. Do we have to try out every hospital we go near? I am so incredibly tired more exhausted than when i came and on high alert. this was our chance as a family to relax together we were giving a house for a week so we could, how often do you get that opportunity. Well that's my big whinge for the day. When is it our turn to relax and not see a Dr for more than 3 weeks, when is it our turn to be 'normal'.
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.
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