I have been having a really hard week. I couldn't figure out what was going on with me. Why was I down? Why was I sulky? Why was I extra stressed? Why was I overly emotional? What was going on with me?
Then I got it, we are coming up to one year post op for Deni's skull reconstruction. And this Friday we have an appointment with the surgeon and his neuropsychologist. Big day coming up. I thought I would feel relief and joy at having made it to one year post op, but I don't, tonight i feel despair and like the hardest part is still to come. I thought surgery would be the hardest part but today I am thinking that the after marth for me is proving to be so much harder. Because Deni was so much older at diagnoses and then surgery he has a different set of problems to the younger babies, his brain was effected, his learning is effected, his emotional well being is effected, he remembers and is aware of what is happening.
Denver is aware that his teacher helps him out at school more than the other kids, he is aware that every head ache is cause for concern, he is aware and afraid to damage his head, he is aware that he is different. He has been having quite a few headaches the past six weeks and he and I know that it is something we have to talk to his dr about. I hate not knowing, what his future will hold. How his brain will go. If he will continue to develop and be able to learn new things. I just hate not knowing will he be ok or not. He is sleeping next to me tonight for he knows that in 2 sleeps we go back to the children's, he has his own anxiety about it and I am positive he can feel mine. Today his teacher sent home his evaluation form that the neuropsychologist sent for her to fill out. I sat reading it with tears streaming down my face not because the information was new or surprising I think it was simply because it was there in black and white in front of me, I couldn't deny what i knew and now some one saw and knew it to, its not just me but his teacher sees it too. We both see his struggle. I am low and I don't want to be. I feel so exhausted. It is hard as people think he is 'cured' or it is all over or that the hardest part has been done, but for me that's not the case, I see an uncertain future in front of me as the mum of Denver and an even more uncertain future for Denver. I hate it when people say its OK that's just normal five year old stuff or he will grow out of it. Don't brush his troubles aside because for us they are real too real.
So Denver will continue to sleep in my bed between his mum and dad, his safe spot until he feels confident to go back to his bed and on Friday I will get up smile and get Denver ready and talk to him about the appointments but also about the fun things we will do as well. I am Denver's mum and I am proud of that.
Then I got it, we are coming up to one year post op for Deni's skull reconstruction. And this Friday we have an appointment with the surgeon and his neuropsychologist. Big day coming up. I thought I would feel relief and joy at having made it to one year post op, but I don't, tonight i feel despair and like the hardest part is still to come. I thought surgery would be the hardest part but today I am thinking that the after marth for me is proving to be so much harder. Because Deni was so much older at diagnoses and then surgery he has a different set of problems to the younger babies, his brain was effected, his learning is effected, his emotional well being is effected, he remembers and is aware of what is happening.
Denver is aware that his teacher helps him out at school more than the other kids, he is aware that every head ache is cause for concern, he is aware and afraid to damage his head, he is aware that he is different. He has been having quite a few headaches the past six weeks and he and I know that it is something we have to talk to his dr about. I hate not knowing, what his future will hold. How his brain will go. If he will continue to develop and be able to learn new things. I just hate not knowing will he be ok or not. He is sleeping next to me tonight for he knows that in 2 sleeps we go back to the children's, he has his own anxiety about it and I am positive he can feel mine. Today his teacher sent home his evaluation form that the neuropsychologist sent for her to fill out. I sat reading it with tears streaming down my face not because the information was new or surprising I think it was simply because it was there in black and white in front of me, I couldn't deny what i knew and now some one saw and knew it to, its not just me but his teacher sees it too. We both see his struggle. I am low and I don't want to be. I feel so exhausted. It is hard as people think he is 'cured' or it is all over or that the hardest part has been done, but for me that's not the case, I see an uncertain future in front of me as the mum of Denver and an even more uncertain future for Denver. I hate it when people say its OK that's just normal five year old stuff or he will grow out of it. Don't brush his troubles aside because for us they are real too real.
So Denver will continue to sleep in my bed between his mum and dad, his safe spot until he feels confident to go back to his bed and on Friday I will get up smile and get Denver ready and talk to him about the appointments but also about the fun things we will do as well. I am Denver's mum and I am proud of that.
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