I have been thinking alot about the way i view things that I am told about Denver and his journey through craniosynostosis and how I interrupt them compared to others, I think I hear and process them differently and different things have different meanings for you compared to me. The thing that has got me thinking about this is our follow up post op appointment with Denver's main surgeon. I didn't want to talk about it after wards as I knew that I needed to process what I heard and also get ready for the fact that others won't hear what I did or if they did they would hear it differently. It makes it hard that my brain works this way and difficult for you too my friends and family.
When the surgeon said the surgery went well, better than I ever thought it would, he looks great, i am really happy with how well he is doing. You hear that but I hear, I wasn't hope full, I was worried but he looks good now, thank god for that, I am wonderful.
When he says he still has soft spots I can feel his brain pulsating through them. I hear what, you can still feel his brain are you kidding, don't touch it, it's his brain.
When he says he is healing nicely he is getting good bone coverage, he can now take his helmet off at night to sleep and when sitting quietly at home with you, but we are not ready to get rid of it yet there are still quite a few soft spots. I hear it has not healed as fast as we thought as we thought his helmet would be off in 6-8weeks following surgery, I fear being in charge of helmet wearing and keeping those soft spots OK and undamaged.
When you say I can't believe how squashed his brain was and the way it reacted when giving a bit of room we are so lucky we got in there when we did. I just think you bastard you and your colleges didn't believe me for 3 1/2 years and his brain was like that because you didn't trust that I knew something was wrong and now you are patting yourself on the back for saving the day, you bastard.
When you say we don't normally do follow up with the neurosurgeon but Denver should because his brain was so compromised and was so squashed that it was rock hard, so I think follow up very soon with the neurosurgeon is a good idea. All I hear his brain was compromised, more than normal, his brain they are still really worried about his brain more neuro appointments cause it's not normally that bad.
When you say that ridge at the back is abnormal I have never seen that before, one of his bones must have slipped and be over lapping the other, gee it is a big ridge. We will just watch that closely and we will probably have to go in at a later date and sand that back and have a look what happened there. I just hear abnormal, never seen before, bone slipping, your going to sand back my sons bone, I hate you.
You hear happy with how it's going at the moment just a few follow ups and appointments but all is well at the moment. But I hear looks OK at the moment, brain compromised like never seen before, strange ridge, slipping bones, sand back Denver's skull, more surgery, more worry, more appointments, more alone than before. I wish my brain worked differently but it doesn't.
Here's a list of all your follow ups with us in six weeks, neurosurgeon, eye tests, neurophyschologist and this person and that person, I just hear yep you are still going to feel like you are living here, but that's OK go home lead a normal life just don't let any thing happen to that head.
So I will smile sweetly for you when I run into you down the street and you ask me how he is and say gee he looks great, you must be glad that's all over with now. I will do that for you but I will also do that for me as I know that you won't hear what I hear and I am happy that you don't, because no one should hear that about their child or anyone elses.
First night no helmet.
When the surgeon said the surgery went well, better than I ever thought it would, he looks great, i am really happy with how well he is doing. You hear that but I hear, I wasn't hope full, I was worried but he looks good now, thank god for that, I am wonderful.
When he says he still has soft spots I can feel his brain pulsating through them. I hear what, you can still feel his brain are you kidding, don't touch it, it's his brain.
When he says he is healing nicely he is getting good bone coverage, he can now take his helmet off at night to sleep and when sitting quietly at home with you, but we are not ready to get rid of it yet there are still quite a few soft spots. I hear it has not healed as fast as we thought as we thought his helmet would be off in 6-8weeks following surgery, I fear being in charge of helmet wearing and keeping those soft spots OK and undamaged.
When you say I can't believe how squashed his brain was and the way it reacted when giving a bit of room we are so lucky we got in there when we did. I just think you bastard you and your colleges didn't believe me for 3 1/2 years and his brain was like that because you didn't trust that I knew something was wrong and now you are patting yourself on the back for saving the day, you bastard.
When you say we don't normally do follow up with the neurosurgeon but Denver should because his brain was so compromised and was so squashed that it was rock hard, so I think follow up very soon with the neurosurgeon is a good idea. All I hear his brain was compromised, more than normal, his brain they are still really worried about his brain more neuro appointments cause it's not normally that bad.
When you say that ridge at the back is abnormal I have never seen that before, one of his bones must have slipped and be over lapping the other, gee it is a big ridge. We will just watch that closely and we will probably have to go in at a later date and sand that back and have a look what happened there. I just hear abnormal, never seen before, bone slipping, your going to sand back my sons bone, I hate you.
You hear happy with how it's going at the moment just a few follow ups and appointments but all is well at the moment. But I hear looks OK at the moment, brain compromised like never seen before, strange ridge, slipping bones, sand back Denver's skull, more surgery, more worry, more appointments, more alone than before. I wish my brain worked differently but it doesn't.
Here's a list of all your follow ups with us in six weeks, neurosurgeon, eye tests, neurophyschologist and this person and that person, I just hear yep you are still going to feel like you are living here, but that's OK go home lead a normal life just don't let any thing happen to that head.
So I will smile sweetly for you when I run into you down the street and you ask me how he is and say gee he looks great, you must be glad that's all over with now. I will do that for you but I will also do that for me as I know that you won't hear what I hear and I am happy that you don't, because no one should hear that about their child or anyone elses.
Oh Angy. :( Surgeons and doctors have so little empathy or insight into the feelings of a mother. They don't have to live your hard journey or go home to your 'not-so-normal' life. Big hugs and love. x Deb
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