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'.

i hate reminders

This morning i laid in bed thinking of all the things i hoped to do today. I then logged into face book to see how everyone was going and found out that one of our cranio kids had died. There is a huge support network for cranio parents on face book, we share the ups and the downs, the hopes and the fears, we understand each others anxiety and frustrations. But today we are sharing more than that we are sharing grief that one of our beautiful babies didn't survive cranio. Kaitlyn would have been two at the end of this month but she didn't make it. Her family have done everything they could they have been strong but now they have been crushed. I think all of us other cranio mums have gone into a bit of disbelief, we all know that this could be us, we could be the ones to have lost a child or may lose one to cranio. It is not a far thing to live with. Today i am flat, i have a deep sadness in my heart, i feel gutted, i feel hopeless, i feel lost. Even though this family and i have never meet in person we know each other, we all go through so much together.
I also have had moments of anger, why don't more Dr's know about cranio, why aren't parents listened to when they say something is wrong, why isn't there more support and understanding, why is cranio not talked about, for fuck sake it is one in two thousands births. Dr's and the public need to be better educated. One baby is too many to lose to this cranio.
A family now will have to go on without their baby girl and a support community will feel the sorrow along side of them and pray that we never have to feel their pain.
Rest now baby Kaitlyn.

We are having a holiday from the hospital...

It feels like so long since we have been at the hospital, but in reality it hasn't been that long, but it does feel like a sense of freedom not to be have to constantly go there. Our last visit was with the main surgeon and it went well, better than what i thought it would. Denver's wound is now healing beautifully no sign of infection or anything else other than a normal healing wound. Anthony the surgeon is happy, happy, happy. He is happy that Denver now appears to be healing well, happy with the shape of his head, happy with how Denver appears to be going. The only concern is that Denver was unable to do his last lot of neuro tests because he was too restless and not able to concentrate, we will try to re-test at a later date. But that aside he is happy with how it is all going. Anthony is going to look further into the cause of the infection as he had never had any where he had to go back in until this year and now he has had two, so he is wondering what is going on weather the stitches have changed in the way they are made or some thing like that. We got to look at the before and the after Ct's of Denver's head and i just found it fascinating the difference. In the pre-surgery one it was just out there for all to see that the shape of his head was just not right, too long, stuck  out in some places, skinny in other spots just wrong altogether. The post-op ct shows such a different shape head you can see where the major changes have been but it was also disturbing to look and see because it also looked like a jig saw puzzle. You could see exactly what they had done to Denver and what he went through. It also helped me understand what i was feeling when i feel his head i could put the two and two together to get a fuller picture. So yeah, we get a little break and maybe just may be i can relax for a tiny moment. (maybe)
Denver had started orientation at school a big thing for us as his future has been so uncertain and we weren't sure whether he would be able to go next year or not. So to think that he will be able to go like we had always planned will be a relief to us. I have some lingering doubts in my head about how he will go and whether he will be up for it. There are little things that he struggles . with and are harder for him due to his cranio. Luckily we go to our small local school where my other four kids have gone so the school knows us well and Denver's teacher next year has taught 3 of my kids and knows Denver's history and all about him, so its nice not to have explain it to them and have them already know all about it and  the journey that Denver and we as a family have been on.
We are going on a family holiday this Christmas, my wish that i have had all year is coming true. We get to go away as a family and pretend that cranio never existed.

Denver all ready to try out school.

P.S. I love hearing from all you cranio mums out there and knowing that i am not alone, that you are all here supporting me and Denver.

it's been a year........

It's been about a year now since we have been diagnosied with cranio. That means 3 surgeries, 8 lots of antibiodics, 2 CT scans, x-rays, 5 special 3D photo sessions, brain testing, neuro testing, blood tests, 7 IV drips, hundreds of stitches in his head, endless appionments i am guessing about 50, 6 weeks away from home and family, endless trauma and many more things. That has been our year and it will continue hopefully slow down, but continue non the less.  Mind you this is all for one boy who just turned five. And yet we have it so much better than some, we are able to get the help that he needed, we live near a captial city with a childrens hospital, we dont have to pay through the nose for his treatment, we are surronded by family and friends, even though we feel so alone we are not.  Everyone always says look for the positive in things, but when your child is going through this, is there really a positive? I am scared that I am starting to get numb by all this. Worried I'm not feeling any more. Worried that i can't do anymore. And it doesn't even happen to me it happens to Denver. I am scarred I am going numb and i don't want to be numb, but I don't know if I can continue to feel so deeply, it is exhausting. Will I ever feel like this is over, that we are pass it. We go back on Friday to see the head surgeon because deni got another infection after they removed the infected part of his scar he got another one in the same spot. It has cleared now but WTF. I'm am also going to ask for genetic testing to see wheather this is gentic in our family or whether it was just bad luck. I'm doing this for a few reasons, so that we are aware if we need to be on the look out wih our grandkids and nieces and nephews, I have also been an egg donor and have a egg baby out there and I am hoping to be able to donate again but I want to know if this is something i could be passing on. To have an answer whether this is in our family. So we go back this week and it continues. Today I am tired.  

here we go again

Tomorrow we go back to hospital for an appointment at the wound clinic again, we will be three weeks post op. I must say that this time last week i was confident about how it was healing, it was clean, small, and normal colour. But this week a stitch came out and so did puss. Not alot but it was there. So i really just left it alone and a few more stitches have come out and so has some more puss and yesterday the wound started to go a bit red and today it is very red and raised, it looks sore and not quiet right.  So i am not confident tomorrow that it will be a great appointment. I don't think they will do anything tomorrow but i think it will course concern and will mean that we are under watch for longer in the wound clinic, it just isn't healing properly, its like that section just cant seem to heal completely. I think they will say this isn't some thing we normally see, not sure whats happening here, lets watch and see what happens.
I am in contact with many many parents across the world that have kids with cranio (my strength comes from them, when i need it most) and alot of our kids are being diagnosed with ADD, ADHD and things like that. It is happening after surgery and when they are slightly older, we are beginning to think it cant be by chance that so many of our kids with cranio that have had the surgery are now getting diagnosed with this. It is such a concern especially after our appointment with the neuro psychologist the other week and once you are aware of some thing you start to see it every where in your child. I do not want to label Denver but its so hard. I am parenting a child that has suffered so much trauma in the past year, he can be really hard to parent and so exhausting. He is high maintenance at the moment and I know that it is natural for him to feel insecure and scared about not knowing what is going to happen to him next. He is missing out on normal five year old stuff. It can be hard to be with him all the time he is very full on and loves me to death often, but it can be just as hard to be away from him. I suppose we are both insecure and in need of the security that we get from each other.
So tomorrow we go back and it starting to feel like visiting and old friend who we catch up with every couple of weeks. If only we could do it over a pot of tea.

Today i did something for my five year old son that i never thought i  would find myself doing. Today we went to the local Dr's to get a mental health plan, so that he can go to a psychologist to help him deal with all that has happened this year and the trauma that he has experienced with all his surgeries, appointments, tests, pain and he's experiences in the medical world and that he often has to leave his five year old world and enter one that no child should have too.  He is not doing great since his last surgery, he looks great to every one else, but it is the way he is at home, with me and some things he says, i know that he is not right inside and we need to get any help we can so that he can get on with life and being five.  We had to cut his appointment on Friday short, he was meant to be having his neuro-psychologist testing, he had it done before surgery and they wanted to do it again at 6 months post op to see if there had been any change. He just couldn't sit still, he didn't want to be there at the hospital, he didn't want to answer questions, he was done and with good reason to it was our second day in a row there and he had had enough.  The Dr called it off after 30 Min's and spoke to me about why. She said he was just not doing well within himself, that he was struggling with having to be there. She then spoke about how he was so jittery and that he was constantly moving around and couldn't concerate and do the test today. She felt that all the infections he had had and all the antibiotics that he had been on in the last six months and the fact that he had emergency surgery the week before were effecting him. She also spoke about his inability to concentrate and focus his lack of attention a few sentences that she said reminded me of ADD and stuff like that, she is concerned. So we will reschedule for Dec-Jan and hope that it has all settled down by then and that he would have started his counselling and start calming down and doing better within himself.

I feeling that my other child are missing out. They are missing out on me, i don't feel like i can be there 100 % for them as I often feel so spent after dealing with Denver and all that is happening with him, just trying to remember all his appointments can be exhausting. Denver takes up alot of my time and energy. He doesn't deal well with sharing me and me giving attention to the other kids, he has always, always been a huge mummies boy but he is getting worse. He always wants to sit on me, be with me, be touching me, being the centre of my attention, he is getting more and more full on. His Dr's say that this is part of him trying to deal with the trauma that he has suffered and this is one way that it comes out. He is happy to go to kinder but is very sad when i pick him up, it's like he can only cope with being away but only to a certain point. I get a break when he gets to play with his cousins, I think he feels safe and secure when he is with them and that no harm will come to him and that they won't ask him any questions. He has also been really tired again since the surgery, its like ground hog day, like back the way it was before. So it is one day at a time some days i take it by hours or minutes.

I am sick of this subject, sick of feeling like i am just managing to make it through the day crawling to get to the finish line. I know that you are probably so sick about reading about it as well, I want it to leave my brain. I didn't realise that this grieving process for me would take s long, i keep getting thrown curb balls t deal with and i feel i cant keep dodging them. I gave birth to a perfect healthy baby boy 5 years ago and i long to feel the peace i had then when he was in my arms, not the sorrow i feel now.

you know you go to much when....

*You know you go to hospital too much when your 5 year old starts talking about their emotions by blood pressure. Lately he when he feels sad, tired, upset or something is bothering him he says my blood pressure is low and then as he starts to feel better he says his blood pressure is slowly going up until he says its normal again and he feels better.

*You know you go to hospital too much when you are going to the er with you child (this was not a life threatening visit, so we could be more relaxed about it.) and you think about what you are wearing in terms of days, whether it will be comfortable to sleep in, sit on a bad chair in, lie in bed with your child, talk to Dr's/nurses in basically live in for as long as possible.

*You know you go to hospital to much when you know which room will be the best one to get in the er. You go with drinks, snacks, books, laptop, shawls to keep you warm and add home comfort, let everyone know by text that you are going there and everyone knows not to worry we will let them know whats happening, that you know exactly what to ask for and who to ask to see.

*You know you go to hospital to much when the reception staff know who you are and who your there to see (mind you they see hundreds of people every day) and say the Dr is running late go for a walk I'll call you when its time.

*You know you go to the hospital to much when you know your way around there like your own home and you find yourself often giving people directions and the thought of moving to a new hospital worries you because you will feel lost.  When your five year old looks at the colour of the lift and knows which appointment we are going to and who we are going to see.

*You know you go to the hospital to much when you start to budget for the cost of going in your weekly budget. $20 a day for parking, $15 a day for petrol, $15 a day for lunch/snack/or a surprise depending what he has done.

*You know you go to hospital to much when your other kids don't even blink when they ask where you are and you tell them, it is part of their normal vocabulary now to hear medical terms being used

*You know you go to hospital to much when your child's file gets heavy to carry around and you don't have to repeat their story more than once that day.

*You know you go to hospital to much when you know the routine of the pre-op room, how the anesthetic goes and what your role is, where to wait, were the very much needed vending machine is while you wait, that you know your way around the theatre rooms and the routine of the recovery room and what to expect to happen and when.

*You know you go to hospital to much when you know the lay of the wards, how they work, where the tea and coffee is, how to pull and and make those awful beds, and that you need to put a blanket underneath to stop from slipping and sliding all night.

*You know you go to hospital to much when if you have a week free from going you feel like you forgot to do something......

No more please

I have a traumatized sad boy on my hands. We have been home from hospital for 6 days and he is sad. He tells me how sad he is. he is constantly saying that his stitches hurt, he goes to show people them but he covers them with his hand. He is telling me he is not doing well and I don't know what to do or where to go. He is back in our bed. He is on antibiotics and he hates them, it is a fight four times a day when it is time to take them. We now have a routine we get it ready, he holds the medicine and hugs me with the other arm he swallows the medicine and then we get a chocolate to get rid of the taste. We go back tomorrow to the hospital, so they can look at the wound, tell us if they find a reason for the infection and maybe remove the stitches which is were there will be a problem. He had stitches removed once after his neuro surgery and he screamed and he hated it, it hurt. He has been talking ever since this last op about how he doesn't want to get the stitches out. I don't know what we will do, i don't think i have it in me to hold him down kicking, screaming, crying, fighting and saying mumma, mumma. I don't feel that i can do it this time, i feel i have held him down enough to get things done to him. I know he has to get them out but how? He has never been sad before and so scarred. It is different this time. He has three surgeries this year on his head plus the countless infections, i just wanna yell enough is enough. We are exhausted. The whole family is exhausted, we are done. And so are the people around us. They are all over it and so are we. Other people have the option of forgetting about it, but we don't. I am angry about cranio it is robbing us of other things in our life. I lose time with my other wonderful kids, i lose time with my husband, i lose sleep and energy, i have lost work as i cant go due to appointments/surgeries, we have lost that ease before cranio entered, we have lost a sense of knowing, lost our security, lost so much. How much more do we have to loose? There cant be that much more surely we have don't have much left our tanks are nearly empty.
 This last week I have had two reminders about why we do what we do for our kids with cranio. One little boy was rushed to intensive care fighting for his life as his pressure became to high in his brain, he was living minute by minute and fighting hard to survive.  He has now been down graded by is still fighting. Another child this week was also rushed to the intensive care fighting for their life due to cranio. Several children have also been taken back to surgery following their cranio surgery because of complications. We do this because our kids have a life threatening condition and we want and have to do every thing we can for them. It is scary. WE are fighting every day with our kids and we are exhausted. People forget that we are always fighting every day, whether its fighting to be heard by the Dr's, fighting to get our appointments, fighting to be understood, fighting the urge to break down and cry, fighting the urge to hide under a rock and take our kids with us, fighting to not hit that person that made fun at our child, fighting about money as having a sick kid sucks you dry, we are fighting to survive with our children, fighting for a normal life, fighting to hold it together. We fight to keep our families together through cranio. So i don't know what to do tomorrow. We will also be at the hospital on Friday for three wonderful hours of testing to see if his brain is working properly and if it has improved, do i want to know, not right now i don't but i don't have a choice for i am his mum and this is what i do. I fight for him.

surgery

In coming back to write i am just trying to remember where i was last time i was here writing it feels like so long ago but also like it just happened. We have had surgery again. After being in the ER we were transferred to a ward for the night. When they came in the next morning they all had another look and decided that surgery was the best option and that Denver would be put on the emergency surgery list, hope fully today but maybe tomorrow. We weren't leaving until it was done and iv antibiotics were to continue. So we just spent the day filling in time and trying to keep Denver from remembering how hungry he was as he was fasting. it was a long day. Denver had to have another CT this morning and he loves having the chance to get out of bed and go for a walk and have a chat to some different people. He is so amazing. He does every thing he needs to and is as still as a statue for his CT. Denver ended up having a melt down about lunch time and then he fell asleep. He was not doing so good this time with being in hospital, we hadn't planned for this and we had no time to do any preparation for this visit and the surgery. It was showing that we were prepared for this. They start getting us ready for surgery as it might happen this afternoon or tonight hope full. and then suddenly there is a theatre nurse ready to take us. Shit, fucking shit, we are not ready. we are off, i take Deni to the toilet on the way so i ring Matt and my mum to let them know whats happening and that we are on the way to theatre. It is the first time that Denver is quite nervous about the surgery, one minute he is all over me and the next he wont talk to me.  He doesn't want to go to sleep normally he is fine but this time he is gripping me and saying mummy it hurts, mummy it hurts. it just breaks my heart i don't want to leave him, but his eyes roll back in his head and he is asleep, so time for me to leave. To the waiting room. I feel scarred for this surgery, i haven't processed it and we don't know exactly what they will be doing. Matt finally arrives.
The surgeon comes and says its all over hes doing really well and they removed the side of the scar and have sent it off to the lab and they will know more once it comes back. Deni is awake and happy to see us. We are back on the ward in no time, settle in for the night. I am happy that the infection is now gone and that it is done.

It started off just looking like a blood blister.

Now it's just a dry crusty puss ball.

And it's exploding.

The green is me outlining the infection so i know if it spreads.

5th infection in this one spot. they just keep getting worse.

Us in the ER, he has his iv going and is fasting.

A smile. Still in the ER.

Straight after surgery. Infected area removed.

Day after. The first scar goes up from the ear this one goes across. So x marks the spot. We call them his pirate stitches.

Looking good. Time to go home.

We leave the next morning. and i walk out knowing that we will be back but choosing to ignore that at the moment.

back in hospital

As you know last week we were off to see the surgeon for the part of Denver's scar that keeps getting infected.
It was like groundhog day. Your surgeon not here you will have to see someone else in a different clinic and he is now fully double booked. Great, seeing someone new always means explaining the whole story again. But he was lovely even after a long weight. I was so happy that there was still infection present (i hate it when you take your kid to the Dr and the suddenly get better). It was just a crusty puss bubble now. He had a good look and said that antibiotics were an option but that since it was a contained infection and he appeared so well that we would leave that for now. He said that he would put us on the surgery list to have the infected part of the scar removed and to try and find what was the course of all the infections. He was not urgent so didn't need to be done in the next two weeks but he would like him done in the next two months. And we left and i was happy, I was heard, he talked to me about the options and the reason behind every thing and he understood my concern and frustration at all these infections. So I left happy in the knowledge that something would be done and maybe this could finally be put towards the middle of my head instead of at the fore front.
Fast forward one hour.
I am sitting in a shopping car park crying my eyes out. Now i don't usually ever cry it is just not me. I always say i wish i could cry more and here i was getting my wish balling my eyes out. This is only the third time that i have cried about this cranio shit, i don't know why it hit me so hard or why today was the day but it was and the tears were fast and free flowing.

It is with disappointment and sadness that i

let you all know that Denver will be facing his

 third surgery for the year. they hope to operate

in the next two months to remove the infected

part of his scar.  they don't know what the

surgery will entail until they get in there and

see what is causing the infection.

love Angy

That was the message that i sen tout letting everyone know what was happening and how the appointment went.

That day i couldn't shake my deep deep sadness. It was just there. It was heavy, so heavy. it was a weight deep inside. it was dragging me down, but i had to go with it and let it do what it had to do.

Crying is such exhausting work, i felt like i had been hit by a bus.

There was a great disappointment within me that people choose not to respond or acknowledge my message. I felt i needed their support and acknowledge meant of what was happening, sometimes that's all that is needed. as people we often don't know what to say but to say nothing at all can be worse than saying the wrong thing.

When i get news about Denver i am often quite and take time to talk about it but there is nothing like a family get together with extended family to get the news out there and the talk going about it at first i was like ahhh i don't know if i want to talk about it, but then it felt really nice to be with these people, they care and i could see their worry for us on their faces and feel it in their embrace so it was actually nice to be there and talking. Thanks Healey's.

Fast forward to today and we are in the ER with Denver attached to a drip and getting iv antibiotics. His infection slowing got bigger in size and just not nice and it started to get sore. It had never been sore before but he was complaining about it and just placing his hand over it. Then in the early hours of this morning it burst. Puss, blood crap oozing out every where. I put a bandage on it and keep a close eye on Denver and sent my sister a message with photos and we decided to see what it was like in the morning. Over night i changed the bandage again as there was so much stuff coming out, he slept well.

When i got up in the morning it looked the same just a bit redder and yukky so i decided Na off to the er this is stupid. So we are now here. We have seen Dr's plastic surgeons and so many nurses. So they cleaned it and it looked like a little crater and it was amazing to watch it quickly fill with puss again. (I love pus) We are here overnight on a drip and then to reassess tomorrow with what needs to be done, whether more anti's or surgery or what. So we wait. We are in good hands, my sister Katy is here playing with us. I will need another big rest after this again.

May this be over soon and may we all move on.

Alone and scared

I am reliving it. From start to finish. The worry, the talking and no one hearing me, the failure I feel about this, knowing I can't protect my son. Tomorrow we go to the surgeon. He has had 8 infections in his scar. 5 in one spot, 2 in another and then one other spot. The one he has now looks nasty and is getting sore. Iknow the trauma of going back there will resurface for him and for me. I sit here in bed at midnight and I can feel the tension in the house, the air, each other and in me. I am scared and feel so very alone. I want to curl up in a ball and sleep. It's just Deni and me tomorrow. I will be strong tomorrow, I will have the best five year old holding my hand as we go up elevators, down corridors and into rooms.
Pray for Deni and pray for me cause I don't want to feel alone.

6 months post op and turning 5

So the end of this week it will be 6 months post op from surgery. Do I feel relieved? No. Do I feel happy?No. Do I feel like it is behind us?No. Do I feel sad?Yes. Do I feel exhausted by it?Yes. Do I think it will ever end? No. Do I think people understand?No.

You may wonder why all of these feelings are here with me and why I don't feel relief. We are having problems with Denver's scar. It is huge from ear to ear in a zig zag, His hair has grown alot lately so other people don't really notice it. Being nearly six months post op it should be healed and not a concern. Denver has had four infections in his scar on his right side and two on his left side. They are always in the same place. The last visit at the surgeon he had had three infections by then and we all thought that now he would not be wearing his helmet any more that he probably won't get any more. If he did get another one I was to ring the surgeon and they might want to go back in and clean up the scar and see what is the cause of the infections. Well he did get another one and I saw it early, so I decided to just treat it myself and see if I could get on top of it and not feel the need to ring the surgeon. I was trying to do any thing to protect Deni from more traumatizing surgery. It healed quickly and with no problems it wasn't as bad as the other infection so I felt good about avoiding the surgeons knife. Last Thursday I walked in the door said hello to everyone and then I saw it. What the hell was it. It looked like dry blood on his scar. Where was if from? Why was it there?
On closer examine and remaining calm I saw that it looked kinda like a blood blister, or hematoma or ???
I checked with every one that had been with him that day if they had noticed it ans no one had, some times only a mum notices these things.It wasn't there this morning. I asked Denver if he had bumped his head today and he said no, which I fully believe as if he ever bumps his head even slightly it is a very traumatic thing for Denver. His kindergarten also rings me if he bumps his head so I knew it wasn't from that, so what was it?
So off to the GP the next day and they don't know what it is, but it doesn't look like an infection, he is fine. I rang the surgeon knowing we couldn't avoid it this time. So we are now going there this Friday, what a way to celebrate 6 months post op. I am scared of what he will say and what it will mean. There is no relaxing with this cranio shit. I am always checking the scar making sure its OK and that there are no changes and it looks OK. But also not trying to scare Denver, i think he is just used to me now. It is now drying out a bit and looking a bit like an abscess. He has also had a few headaches in the last two weeks, with any other child I won't really pay that much attention to the odd headache, but with Denver it could just be a head ache or it could be more. If only I could protect his brain. There is already damage to the back half and that's more than enough thank you. I want it to stop, give us a break please. The exhaustion with cranio came back with the new strange thing on his scare. On face book that day i think my status says it perfectly.

I am not angry, bitter or frustrated.
I am just done.
Done with cranio.
Done with what it has done to my son, my family an me.
It's a grey cloud that just won't shift.

On a brighter note Denver turned 5 yesterday, the big all important 5. We celebrated with a party on Saturday and a family dinner last night. I was sad leading up to it as Denver is my last baby and he will now be five. I have enjoyed the early years so much with all my kids. But I was also so happy that he made it. My sister and i called i 'stayin alive at five'. He was so happy to be turning five and after such a big unknown year it was a relief to make it and get there. So my baby is now five and I am so proud.
What i wrote for Deni on his birthday.

Early this morning five years ago I gave birth to my fifth baby and second boy, Denver James.
As we looked at each other for the first time, it was a look of there you are, we already know each other.
I miss having him to myself in my belly or snuggled at the breast, But I love to feel him in my arms for huggies and to see that smile on his face.
He has taught me so much in our five years, more than I thought possible.
He has the most deepest and richest love for me and my family.
He has taught us courage and to never give up, that every thing will be alright with a kiss and a cuddle.
I love you my Deni.
Thank you for choosing me to be your mum.
I love you so.

Life goes on....

Life is still going and as always it has it ups and downs. Denver is loving kindergarten and being back with his friends and feeling normal now that he doesn't have to wear his helmet. He has the sparkle back in his eyes and is confident. He is going so well, but sometimes it is as though we have gone back in time and we are back just after the operation. If he bumps his head even just a tiny bit, the fear and trauma that that can bring Denver is huge and normally takes quite alot of hugs and soothing to reassure him that he is OK. he had his first fall at kinder and knocked his head. His teacher was wonderful and sat him down and made sure he was fine, before calling me and having a little panic attack. He was fine and we all survived.  I overheard Denver having a conversation with Terry in the cars about operations. He was explaining how the first one hurt and wasn't nice but that the second one didn't hurt and they took all the hurts away and the bad bits so the second one was much better. So that was so nice to hear and really reassuring that he was going OK and wasn't angry about it at all, or untrusting.  His hair is growing, oh so slowly but growing. 

The only down side is we are still just waiting and seeing to make sure his brain is OK. He has had a few things that are worrying me. He has had a day sleep every day this week, which normally wouldn't raise alarm bells so others but for Deni it is a thing to watch as it may mean he is not sleeping well at night again which could be due to brain pressure. yesterday we were painting and having fun and he could not remember the colours. Denver knows his colours but he didn't yesterday. His favorite colours are orange and blue and he couldn't remember their names. Oh my heart broke, but in true mummy style we just move on and keep painting. But i am now on high alert (as if i never was). The other thing i am worrying about is school next year. With all this going on is he going to be ready, is his brain going to be able to cope, will he be OK? It is a struggle between wanting him to be 'normal' and go with the flow and do what we had planned for him or stopping and going no, our kid has special things we need to take into consideration. Denver is so excited about going to school next year, if we decided to keep him in kinder for another year it would be a blow for him. So...

But Denver is here and doing well and so is the rest of the family.

We only have to go to the hospital every three weeks now so that is such a welcome relief. For the most part our days are 'normal' just like any other family. I am getting used to the new Denver but sometimes my heart cracks when I see his scars and wish it could be different for him. But it's not and we are learning to live with cranio being part of our lives.

I wish I could be more positive today, but I can't. I have been going to write about our last appointment for a couple of days but waiting to get more positive about it but it hasn't happened yet. Don't get me wrong the appointment was not dome and gloom not even close, but I am struggling with it. We went to Denver's neurosurgeon on Thursday. I haven't told many people about the appointment or have just said it went fine when asked as I have already been told don't worry about it, it's fine, forget about it. So been keeping to myself on this one.
I really like his neurosurgeon so that's a good start. She was amazed at how well he looks and how he appears to be going. She said that his brain was very very tight when they took the skull off and that it had no room left so it was lucky it was done then as his brain really had no time to spare. She said that she expected that his brain would have expanded nicely into the new shape by now. She is confident that his brain pressure has gone down as he doesn't have nearly as many headaches and his memory and speech have improved. So that all sounds rosy. I then ask what about the future, will the coopering at the back of his brain improve or disappear, will his brain by OK from all of this, will he have 'normal' brain function, will he be OK. She replies we don't know. We know that his brain was suffering but we don't know if his brain will mend itself or if it will do OK. We hope that it does but we just have to wait and see. So I say wait and see for what? We have to wait and see if he reaches his milestones, if his brain continues to develop correctly, if he learns and remembers things as he gets older, we have to wait and see if the brain will heal itself or not. We just don't know what will happen we just have to wait and see.
I hate the words wait and see, they don't tell you anything. I have decided I am not a patient person when it comes to the medical side of things I want answers and I want them now. I HATE wait and see. I left feeling like I can never relax, I have to keep watching so closely, never drop my guard always be on the look out. I said to my hubby I feel like nothing will ever just be normal, when he brings his school report home I will be scanning it to see if he is keeping up, if he is improving, is he 'normal'. I read my other kids school reports and just want to know that they are learning and happy, I am not bothered about if they are doing every thing at the right time and level, I just want them to enjoy learning and be happy. I nearly feel that that has been stolen from me with Denver because we will always be waiting and seeing. I think I am really feeling this one because the last one made me feel so positive. It is also because I have lost one of my support groups which was my class every Friday with my doula women, losing a place where you can be free to feel any thing and be comforted by others, with no judgement and no questions and no you should be over it by now statements has left me longing for that safety. It's also school holidays so I have been out of routine and missing my coffee friends who always make me laugh and forget about the world.  It would be better if I thought that this would ever end, knowing that it won't is exhausting. having people say " I bet your glad that that's over" is hard to take politely, that operation is over, but the trauma is still here. Denver has become extra clingy since that appointment, Tells me don't ever leave me mummy, your my mummy or I am never gonna leave you mummy cause your my mummy. he is stuck to me like glue and I am finding him in our bed once more at night. So no I don't think it is over, but we will just have to wait and see.

Quote of the week from Denver.
"Mummy I think I've lost you know that thingy in my brain that remembers things, I think it has moved somewhere else in my head."
If only he knew how true that was.

It is hard to believe that we might be on the other side. It has taken such a long time to get here, but maybe we are here.
We had our 12week post op appointment last Friday and they are very happy with how Denver's head has been healing and the shape that it now has. Of course there are things we are still watching but overall the news was good. Denver has had three infections in his suture wound and if he develops another they want to operate to remove and undissolved stitches that may be left and causing the infection. The ridge on the back of his head is still prominent and a little cause for concern. The main worry that if something were to hit that ridge the skin would split open because of the shape of the ridge. They are hoping that it will mould and settle down but if not the will do an operation to smooth it down. They also spoke about that they might want to go back and make his scar smaller as it is quite large on the sides and no hair is growing there at the moment, but its a wait and see. None of those things even compare to were we have been and feel so minor at the moment, they are not life threatening and can wait for another day.
So that's all the concerns but there if GREAT news. Denver is now helmet free, yep helmet free. He has gained so much confidence and you can see that there is more light and joy in his eyes, its amazing. He now thinks he can do anything with often leads to me cringing, but he is so happy. He is so happy that there is nothing different or standing out on him, no one asks him about his helmet, I suppose he feels normal again.
They are so excited that Denver is getting memory back. Not as excited as us though. That he can now remember things that happened before the operation and after is so exciting. To know that all those memories can be slowly accessed again is mind blowing and brings a tear to my eyes. He was able to read a book back to me the other day from memory which I took for granted with my other kids, but didn't realise how important it is until Denver could no longer do it.
They think that Denver should be able to play contact sport when he is older. Once again to know that he will be able to join in at school sports and games and not be singled out is a huge relief.
So it felt like a happy fest of good information on Friday. It feels so much lighter, it's so nice to hear good news instead of doom and gloom.
We now only have one appointment a month for a few months so that's going to be good not to be always going back and fourth. We are not out of all the woods yet, but its good progress and we are so happy today and Deni is beaming and that's what we did this all for and that all that matters.
We are off on a holiday, me and the kids to have some fun, relax and be normal, no doctors, no helmets but lots and lots of fun.

can you believe it's been 12 weeks.......

Yep it was 12 weeks on Tuesday, unbelievable. It feels like some of the time has flown and then that other times have gone incredibly slow. We head back to the surgeon tomorrow for our 12 week post op check. I am nervous but not as nervous as i have been before. I feel OK at this moment. But as I think about it more I am starting to get a little nervous.  But Denver looks great, he is not sleeping in our bed anymore he has moved in to terry's bed, it's a step in the right direction. So not sure what we will find out tomorrow or what they are looking for. I hope to find out more about the ridge at the back of his head where they think his bone and slipped and see what they what to do with that. I am very excited as in the last three days Denver has started to remember things, which doesn't sound huge but for his it is as it was something he lost. He remembered a story I read to him and could read it back from memory, he remembered a place we went to today that we were last at in August. So little things like that have started to happen and Matt and I are so excited. It's those little things you take for granted, that matter so much. He has just recovered from his third infection of the suture wound so need to get that checked out and hopefully maybe get rid of the helmet. He has been allowed to wear it less and I am starting to like and get used to the new Denver. His hair is starting to grow. He and I, well everyone for that matter gets very nervous when he doesn't  have his helmet on so if we do get to toss it it will be interesting to see how that goes for us all. So all I can do now is hope and pray. Tomorrow's appointment involves no physical pain for Denver so that's a bonus and a half, not looking forward to the next round of appointments. Here's some pictures of took of Deni yesterday to show you his head 12 weeks post op.

 Pre-op and 12 weeks post op very different shaped head.

His cousin Marlee loves the helmet and thinks she is pretty cool.

A Picture......

It's amazing the power that a picture can have. Picking Denver up from kinder on Tuesday and I spotted their place mats that they have with a picture of them on it and their name on the other side. On top of the pile was one that looked like Denver. I picked it up and just held it in my hands and starred at it. It looked like Denver but it didn't as well. I just kind of starred at it in disbelief. Was that really Denver. I even turned the place mat over to make sure that it was Denver that it was his and his name was on the back. I looked up at Denver and then back at the picture, it felt unreal. He looks so different now. I then had to put the picture down as I am sure I looked odd (more than normal). 
On driving home I got mad how could they not see, how could the Dr's not see what I saw. I hated that I was getting made about this again. But the feeling of not being heard and believed were all coming back up to the surface. But then I just got sad. Sad at the difference that there is in the way he looks. I hate to say it but I still like the old Denver more. That Denver was the love of my life for 4 years and now he looks different and I love the new Denver, but their is a but. If I could have the Denver that looks like that back without the cranio and the suffering I would. It hurts deep inside that he looks so different to me and I am amazed that I still feel so deeply about it still. It is hard as this journey is not over. His head is still changing after the op and there might be more surgery down the road we don't know yet. Cranio has changed Denver not only on the outside but on the inside as well, Denver often has daily struggles with something to do with cranio and all the medical stuff. We are constantly together and trying to quietly reassure each other. I think we are both exhausted.
Denver gives me the most incredible hugs with his tiny little arms and if I close my eyes and melt into the hug I can forget the cranio for that moment and that is when I am truly happy and at peace.

no one's picking on me....

I have just finished a book I have been reading and there was some thing the said in the book that really stuck a cord with me, it just made sense to me and was like a light bulb went on. When some thing like this happens to you people say many things out of the kindness of their hearts but it's not always the best or right thing to say and that's OK, i really liked the way the women expressed herself when explaining what was happening to their family. Here's what she said.
"There are three things that well intentioned people have already said to us that are not helpful. The first is this: 'God only gives you what you can handle.' I don't believe this. I have seen in my life many people who have landed in situations that they couldn't handle. I hope that we are strong enough to handle this, but i will never accept this as a test from god. I don't believe god tests people.
"another one that gets to me is that 'this is gods plan.' that theology doesn't work for us. We don't believe that god sits up in the heavens and decides who gets what tragedy or blessing. We are certain that god didn't do this to us. We just know it happened, and now we are going to lean on our faith, and on you to get through.
"The last thing that i would be happy to never hear again is;'something good will come of this.' i have no idea what is going to come of this, but i can confidently tell you that, regardless of how this turns out, we will never, ever look back on this event and say, "Good thing that happened.'
(Inconceivable written by Carolyn and Sean Savage)
 There it is it just made sense to me. I often found myself asking why us, why Denver, why me. But i don't think there is an answer. Maybe I should be asking why not us. We are no different to anyone else, we are not stronger, smarter, better parents, more resilient or any thing else we are just like you. We were not chosen, it is a comfort to know that someone is not sitting there deciding that yep they can handle this and this and this and well how about this too. I was raised catholic and I do believe in a greater being and in spirituality, i do not believe in all the teaching of the church. But I believe we are not alone and I know that I am not alone in this and will never be, but I also know that i was not singled out and chosen to have this challenge and that's a comfort to know that no one is sitting up there picking on me. Life is always full of challenges and lessons and i can only hope that we get through to the end of this life and journey still learning, still loving and still living.

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.