I think I hear things differently to you

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.

Am I still bitter???????

I ran into someone down the street today and we were chatting about how Denver was going, so i told them and they said you look better you don't look so drawn as you did before and I went on and said, I don't think I am bitter about it any more, I think I have lost alot of that bitterness. Now that I am home I have been thinking about what i said and why i would say that. Yeah I don't feel as bitter but I still feel alot of not great things about this journey with cranio. I am still so so angry about so many things, I am still so sad about many things and I am still mentally and emotionally exhausted, I hate many things about this there are very few things i like probably the only hing good to come of this is that i have meet many other wonderful parents who are going through the same things as me, while I wish that none of us were going through this I am glad we are in it together.

I used to be strong but I now spend more time feeling weak than strong. I feel like alot of the joy has been sucked out. I used to have a strong brave non fear full trusting son, now I don't. Yesterday as we are walking into the hospital for his eye test he says to me I wonder what they will do to me today mum? the fear in his voice and then to drag him in knowing that you will have to hold him down kicking, screaming and crying does nothing to relieve my guilt at having to do that.

I used to trust the medical profession now I don't. They did not trust me when I told them repeatably that there was some thing just not right with my sons head. They want and expect me to trust them without question but I do not get the same in return. We have our 6 week post op visit tomorrow with the surgeon and I am more scarred than anything, I don't trust him to tell me the whole truth, I don't trust that he will touch and talk to my son and me with respect, I don't trust that he will hear me not just listen but actually hear me, I don't trust that he will answer my question's in full, I don't trust him to believe me , I just don't trust you because you never once trusted me as a mother not over reacting but as a mother with a gut instinct that some thing wasn't right.
I used to know every inch of my son but now it changes every day and not in a good way. I hate that I can feel more new screws as the swelling goes down, I hate that he looks different, I hate that it's not him any more, I hate that now we look at his head for problems, changes, marks and not as a product of beauty but now as a product of a medical world.
There is joy gone because of this cranio we no longer have the care free ness that we used too. Our conversations have changed, our worries have changes our lives have changed.
It is a struggle in more ways then one it is eating at our heart and soul.
I used to be able to look at kids and babies with pure joy and wonder, the favorite part of a new born to me has always been the back of there head but now I am scanning kids and babies for the shape of their head, is it OK, is i the 'normal' shape, is it even. I want my joy back, I want to look and not wonder if their head is OK. Would a mum want me to tell them if i thought some thing was not right? I don't know, but if I can spare some one else the pain of a late diagnoses is it worth it?
I have lost trust in people throughout this. People you thought would step up to the plate and help and said they would haven't but then I am doubly blessed when some one unexpected steps up and helps, they don't have to be asked they don't have to be lead through it inch by inch they are not in it for themselves they sincerely want ti help.  I have learnt that some people aren't that concerned with how Denver is they just want to know so that they can talk about it at the next gossip sess with their friends they may offer to help but never actually do, even if you ask. But I am now seeing the true beauty in others and that is a blessing and I love them for that.
One other good thing is that I am loving my new hair cut and have now been joined by my identical twin 7 yrs olds who are also loving the new hair do.
I have found some strength deep within my self that i didn't know was there i am finding ways of how to reach it when i need to but it's not easy.
I think I still sound bitter and here i was thinking I wasn't, may be it's just because I am so disappointed with yesterdays result. Denver's back of his eyes (were they check for pressure) is still the same, they called it stable, but I don't want stable I want some thing else, not the same.
I want a glimmer of light and hope. I want my old life back with you craniosynostosis.

Before fear entered his world and mine

  

My strong muscle man



Fear is now a factor in our lives and this is us waiting for an appointment. No light in his eyes.



His twin sisters Lily and Hannah join in the head shave

2nd half. not for the faint hearted. how do you explain the day you thought your heart would stop

How do you describe the day you thought would never come and then the day you can't wait to come and then the day is coming up to fast and then the day is here and you don't know if you will live through it and what's on the other side. The day of Denver's surgery is stored deep inside i can't remember so much of it, I think I am protecting myself from having to feel that again, but i suddenly feel the need to get it out and write about it. I feel it may take me several goes and lots of time. It's funny the surgery feels so long ago but also as though it was yesterday. It's still so raw. I guess i feel the need to process what happened on that day before we start the next round of appointments and start getting some results (hopefully).
The night before surgery i am just trying to get every thing organised but also spend time with my kids some thing happens to but us behind and interrupt the flow of my mind but i can't even remember what it was. I am madly packing/ what on earth do you pack for this kind of thing so i think i kinda just through every thing in the suitcases it's easier then having to think and really think about what is going to happen tomorrow to my son. The plans that we have for the other kids are thrown out as my mum has injured her eye and is now at the eye and ear hospital emergency waiting to be seen so behind the scene my family are working out how to take over the care of my other kids. My sister and her kids arrive to look after the older ones and the chaos continues in my mind. Denver sleeps with us it's for his comfort but also for mine, I just want to hold him one last time like this as he was born, perfect, untouched and he's still Denver. Will i bring him home, will i bring home the same Denver or will he be different.
I can't believe that we sleep but we do i wake up before the alarm and it's like routine you would think we do this every day up shower, dressed breakfast, kiss and hold my kids in their sleep before we leave then carry a still sleeping Denver to the car. Once we leave there is no going back. We arrive at the hospital with five minuted to spare can't believe how busy the road is at that time of the morning. The sad thing is we know exactly where to go we have been to this surgery waiting room before. We only have to wait about half an hour if that when we are taken into the next waiting room. This is where we meet all the people involved the anestic team, the trainee Dr;s there to watch and learn, the neurosurgeons and every other man and their dog. I start to guess that some thing is wrong when i see a group of people our people gathering in a group in the corner chatting quietly and looking over at us. I know some thing is wrong, i start to feel sick, they better not send us home, i can't do this again i can't wait for the day again' i can;t do this again, what the fuck is going on they are still quietly chatting and looking at us, no one is talking to us. I am trying to be calm but i want to throw up.


I'm tired I need a break..... to be continued


We sit a and wait and watch them gather and quietly chat in the corner. It's a terrible room long and thin we kids and families on both sides just waiting. I see the surgeon i don't like walk in oh whats he doing here he must have other surgeries today. He say hi how are you going? I say fine how are you? And as he keeps walking past he says ' I would be a hell of a lot better if we could find your surgeon.' and he just kept walking no explanation no nothing. I am stunned. What did he mean. WTF. How does that happen? Then i go into he must just be stuck in traffic, he's just running late he'll walk in the door any minute.
Make this stop lets just have it run smoothly, come on. The head anestic person and a nurse come over to us, finally some one actually comes to talk to us and let us know what's happening. They explain that your surgeon is not here yet and we haven't been able to contact him, but it's OK, we will keep going. Right that's not to bad, is ti it's going to be OK, he is probably just parking his car. Then they gather again and chatter quietly. The surgeon i don't like walks over. We forgot to book your surgeon for the operation today every thing else is ready to go but your surgeon is at another hospital doing surgery and won't be here as he wasn't booked. I want to melt into the floor. He continues if you are happy i will do the surgery. Um mm. Are you happy ot do the surgery, have you done one on a four year old before? He says I am very happy to do it, I invented this surgery for cranio that we are doing and i have done it on older kids. if we don't do it today I don't know when he will be able to get a spot for this surgery and he needs it done.  I ask what are you doing here any way? He says i am here to watch Denver's surgery and then i had my own surgery to do this afternoon but I am happy to put them all back. I don't know what to do, I haven't liked this guy, but I can't do this again, Denver needs this done, if we don't do it now he will be at real risk of things being damaged in his brain that can never be repaired. I feel I don't have a choice. I suddenly get this calm over me that it's OK, the people that need  to be here are and this is the way it is meant to be, they are the right people for Denver's surgery. It's weird I can't really explain it but suddenly it feels right. So I say I am happy if you are.
And then it all starts, they come over and give him pre-op medication. They say to watch him he will go a bit wobbly and lose his balance. He seems fine. They come to get him to go to the pre-op room and suggest we put him in a wheel chair, Matt says he's fine and then like on cue he wobbles. So off we go Deni in wheelchair having a great time.
We are in the pre-op room and we are sure Denver is Stoned on those drugs. He is so funny and Matt and I get funny looks as we are laughing at Denver and what he is doing. More and more people come and talk to us about this that and every thing else. I suddenly feel sad that this is how Denver is, stoned, this is not the Denver i want to remember, i want my Denver back. He settles, he is sleepy. We cuddle. I see them coming, I know they are coming to get him. I want to run out of the room with Denver and shout no not yet I am not ready to say good bye, I don't know if I can do this. But i Don't we are told one of you can go in with him, it's me we say good bye to Matt and I carry him through to the room. I hug him so tight, i never want to let go, he feels so tiny and fragile in my arms, my arms that are meant to protect and keep him safe. I get to the bed, I don't want to put him on it. But I must. I hold his hand and stroke his face and say it's alright mummies here and i will be here when you wake up. It's OK, I love you. We get the chocolate flavour for the gas and they put the mask on his face he smiles he loves chocolate, he stares at me I smile. He starts to drift, I wan to call him back and take him home. All of a sudden he struggles and wants to fight the sleep, I stroke his face and tell him it;s OK go to sleep mummies here I love you. He trusts me and stops fighting it. All of a sudden he is asleep and I am quickly taken out of the room as they get ready to incubate him. I clutch his teddy. I want to stay there outside that room, close to Denver. I go and find Matt and tell him he was fine a little struggle but he was OK.

Matt and i look at each other, now what? We had been told time and time again to leave the hospital, don't hang around the day will drag and last so much longer if you just sit here and stare at the walls. So we head out. I decide to go up to the women's hospital as I have had a women's problem I haven't had time to get looked at and I have all this time, so we go and sit in that waiting room and are seen in record time, I am sorted and away we go. Now what I thought we would still be sitting in there waiting to be seen. We jump on  a tram and head to the market. We just kinds stumble around the market. I have to stop myself from thinking about what they would be doing to Denver, which part of his skull are they taking off now, is his brain OK, is it going OK, this  just sucks. I have an image running through my head Denver on the operating table face down his skull removed and in bits on a table next to him like a jig saw puzzle and his beautiful brain there exposed to the room, no one  is comforting Denver he is crying but no one is there, his skull is gone he is alone. I don't know how we fill in time, but we do. we go and sit and have a drink. I decide to call in reinforcements i need more support. So we wait and my sister Katy and my brother in law Phill come in and meet us to have lunch.  You can see that they also don't know what to say or do but they are a much welcome relief for Matt and i.  We have lunch what do you talk about when  you know that they are taking apart your sons head. How do you do normal talk, I don't think about much else.  We finish lunch now what, Phill heads off to work we decide to go over to the tattoo shop and have a look as Matt is after a new tatt and what else is there to do, we hang out in there for a while getting a design done. I suddenly feel the need to be back at the hospital to be close. I talk about it with Katy the feeling is so strong. We decide to not go yet and go some where else it is too early. We go find her car and head off to a shopping centre. It takes us forever to get there and then even longer to get a park. We walk in and my phone rings. I can't breathe, what if it's bad, what if some thing is wrong. I want to die at that point, I don't think I can go on, I don't think I can do this, I don't want to hear what they have to say, I just don't want to do this. I have to think of Denver what if he needs me, I answer it's the surgeon, the main part is over, he is OK. They are still going but it's at the tail end of the op. His brain was bad one of the worse he has ever seen so squashed and under pressure, he says we are so lucky we did this now he really needed it done, he has lost alot of blood more than normal but they think that's mainly because he is older than normal, he will be OK, we will finish up, he says it has gone better than what I thought it would. Make your way in so you are here when he wakes up.  I start walking back to where we just parked the car, come on Matt and Katy hurry up. It feels like the longest drive ever but we make it, it is hard not to run up to the waiting room, even though we still have a lone time to wait until they come and get us. So we sit and wait. I feel calmer now to be here and know that the main part is over. Other thoughts start to creep into my head what if he;s damaged, what if they can't wake him up, what if he keeps bleeding that what ifs keep coming.  It is a long couple of hours. I feel for all the other families that surgeries were put back or cancelled so that Denver could have his, I am sorry for any pain we may have caused them. Matt falls asleep. I wish there was something half good on the telly. It is taking  a long time. I pray for him, the Dr's and for us may we make it through the rest of the day.  Finally we hear those words over the loud speaker can the family of Denver Healy please come through, I leap up out of my seat, kick Matt and I'm out the door charging down the hall way. I don't think Katy comes yet I can't really remember. We get into the recovery room and I can't see him, there's not many kids in there, but i don't know which one is Denver. we get pointed to the bed at the end with people standing all around it, I can't see him yet. I feel as though i am walking so slow, some one moves and i see him. My breathing stops, What have they done to him, he looks so different, it's not him, what did they do, i don't think i can walk forwards any more they must be wrong it can't be him. He then opens his eyes and looks at me and I know it's him I go to him, oh my god Denver, I'm here, I love you, I am so sorry. He looks dazed and confused and in pain. He is scared I am scared too. He has stuff coming out of him every where. I don't know where to look I don't want to cry. Denver must feel my pain and goes to stroke my face. It is him he is in there. People are all around the bed still doing stuff to him. I just hold his hand and talk softly to him and say it's gonna be alright mate, I feel like I am lying I don't know if that's true. I have never felt like this before, he is there but not at the same time. The anestic team come and talk to us, he did really well throughout the op only one minor incident but he was fine, they are happy with how he is. So many people come and talk to us. The neurosurgeon comes over, I like her she is honest I am glad she is here. She talks about his brain. She is happy with how it went she said they had no time to lose his brain was so tight they couldn't have waited any longer, but she is happy with how it went. Yeah. The cranio team arrives they head over. They are beaming, it went sooo much better than what they thought it would, the result is better than they could have imagined, they have reshaped his whole head and given his brain much more room. he has lots of plates and screws in there holding it together and some soft spots. They were able to cut his bone into thinner buts to cover a wider area and spread his natural bone around. They can't believe how bad it was and are so happy with how it went. They then go more serious and talk about his brain. It is one of the tightest brains they have ever seen, it was really struggling with the pressure. They said that is was so squashed that when they removed the first part of skull from the top of his head the brain started to bubble out in search of more room. They slowly took more and more bits off and it keep bubbling up, they couldn't believe it. They said that even when his brain had bubbled up a bit it was still very tight, normally your brain feels like a sponge nice a squishy but that Denver's was like a rock, rock hard and no give. They say over and over how lucky he is that they got in there when they did. We hear this story many times that day and over the next week, it's like they are breathing a sigh of relief that they just made this one, it was nearly too late.

I focus on Denver we stroke each others hands it's like we are both so relieved to be back together and we never want to part. My heart swells for him in love, guilt and pain for what has happened and what will happen in the future. I am so sorry, I wish I was a better mum for you, that I could be stronger, that I made them believe me when I said some thing was wrong, I wish I could take this all away from you, I don't want you to feel this pain. My heart breaks.

I know the surgery is over but i can't relax yet and I can't stop the guilt. We don't know the out come yet we don't know if it is still Denver in there, the Denver that we know and love so much, we don't know if they got there in time and if his brain has suffered any long term damage. We don't know what trauma has been caused to him, me and the rest of the family. All I know is that he's alive he made it through the surgery and that's enough for right now. I love you my Denver.

5 weeks post op, appionments starting again.

We are now five weeks and a few days post op. It has been a better week emotionally this week. I went to a women's circle on the weekend and got to focus on my feeling and why they were still so intense and haunting me so. It felt like a release. So it has been a better week for me we have had a few things going on, Deni has got an infection in his wound which i noticed one night during my nightly inspections. Just some dry puss but then if you touched near it some puss oozed out. It was late on a Saturday night and after much talking with my sisters and dad who are all in the medical profession it was decided that unless he developed a fever or became unwell it was fine to leave it till morning. So we went to bed and he was fine at the hospital the next morning they did a swab and he got some anti bodices. The Dr was amazed that he knew exactly what to do when they got the bp machine out, the oxygen reader out and all that other stuff, he didn't like it but he did it. Two more visits later and it's healing nicely although it has been hard to get him back to the Dr's he is just over it.

Might en look like much but it's enough to cause serious problems if left untreated, it you pressed around it puss oozed out, the redness was slowly spreading up the suture wound as the infection spread.

So that sorted it was time to look at the diary and figure out when our next round of appointments started. I had enjoyed a wonderful 2 weeks appointment free and not even looking at my diary. I felt the anxiety arrive the minute I got the diary out. Then I realised that i had lost a referral the one for his special 3d photo's that he needs to get done 6-8 weeks after surgery, I searched everywhere, rang people Na couldn't find it. The panic set in and I had a full blown anxiety attack over a stupid fucking referral, I was so made at myself for losing it, how could i be so careless and stupid to lose it, i was so angry at myself for letting myself have time off, relax,drop the ball and this is what happens. You can't just get in contact with my Dr and get a referral it[s just not that easy it's a full on process to go through the hospital system, it would be more heartache then what it was worth. The next morning i suddenly thought you know what it ain't that bad it can be sorted, it will be OK.  We are straight back into it next week two appointments eye test on Tuesday which is one of the ways they check the pressure on the brain (nervous about this one) and then post op with the surgeon not to worried about this one I think it will just be a run down on what happened but i am hoping we will get some idea of the immediate future for Denver and i will get a new referral and the photo's will just be a couple of days later than planned but in the big picture i now know that that's OK and it will be fine, hos head is not going to change in a couple of days.The Dr's such an ass I'm not looking forward to trying to talk to him, but hey.

Deni's head. I am now starting to accept the new head, I decided I don;t have to like it but I can be happy that this one no longer causes him pain like the old one, this one is different but that's OK too, i will grow to like it and maybe one day I won't notice the bumps, scar and feel the screws and metal that are now holding his head together. may be one day i will be OK with what happened but maybe i won't. I am hoping my feeling might start to change when the helmet comes off and i am just seeing him and not his helmet as well. May be one day i will forgive myself for this and hopefully he will too. I don't know how i will cope with going back to the hospital and starting the round of appointments again, I don't feel as strong as I was before I feel a bit old and withered by the storm that is cranio.

Denver is still showing some signs of trauma associated with the surgery and appointments that we have been too so I am unsure about how he will go. The first appointment we have is an eye test and this is the one I have always had to hold him down for and i am scared it will be worse now. I hate holding him down, it breaks my heart. I am now looking into getting Denver some counselling by a specialist counsellor who deals in this area to see if they can help, I feel that if this is left untreated and ignored it will only come back to hurt us down the long run, no one should have to live with trauma and if they do have trauma i want him to be supported. So that's me, going on a bit tonight but i am nervous.  Send us your strength and love the journey is still going.

Some pictures of Deni's head 5 weeks post op.