4 weeks post op and we are...

It was four weeks post op yesterday. I have been away for four days without Deni or my other kids or hubby and it was wonderful. i went some where where only a few people knew what has happened in my family in the last year and it was wonderful to get out of this world and into that one, it felt like what life did before cranio. it was a relief, like a burden had been lifted for those few days. No one was looking at me like a mum suffering inside, no one knew to ask how's Denver, or whats cranio, i got to have conversations about other things and to think and feel other things. I got to allow myself to be me, just me, not the mum of five and not the mum of the little boy with the funny head and now wearing the helmet. it was so refreshing. don't get me wrong i thought about my kids and Denver often, but it felt like the burden had been lifted for that time, i knew Deni was in good hands even though they weren't mine. it was on the last day that it started to feel heavy again on the inside, it was a feeling i didn't miss. I didn't relaise that alot of the pain and healing would happen after the operation after we walked out of the hospital, after we were home. I thought the hardest part would be the surgery but it's the after marth that is proving hardest. The light at the end of the tunnel feels just as far away as it did before the surgery it doesn't feel any closer.We have had the surgery and while the dr's are happy with how the surgery went we don't know if it did what it was meant to do if it has been a success, if we have to do this again. I thought the wait would be over but it is really just taking off and it's hard work. Denver for the first time refused to talk to some one when they asked him about his surgery, this is a trusted known person to denver and he put his hands over his face and closed his eyes and refused to talk until the subject was changed, this is the first time he has reacted like this and it is worring. But we can just takeit step by step. When i got home and  walked in the door of my home excited to see my family but also trying so hard to resist the urge to push everyone aside scope Denver up and examine his head. but i held back and gave the impression that yep I'm fine i trust you i don't need to examine him head to toe. i got my chance when i went off to have a shower and Denver came with me with me being away without him he was not leaving my side. so in the shower without his helmet on. his scar looks good, little red in some places but overall good. but his head is different again, I'm not sure why maybe the swelling has gone down a bit or some thing but there is now a dip where there wasn't one before and the ridge at the back is more prominent and just a few other changes. so i am thinking well hoping that it's cause swelling has gone down. But i still don't like his new head. I feel terrible thinking that but i don't it's different to me in so many ways. it is a horrible feeling rubbing your sons head for affection and then realising that the bumps you are feeling is screws that are sticking out of your sons skull and they are feeling more prominent and huge and hard. it just sucks. i love Deni but i hate his new head. it holds alot of pain for me, he has a scar on his head and i have a scar on my heart. it is getting better but there are moments like today in the supermarket that it all gets to much and the tears threaten to flow and it's just me walking around the supermarket trying to buy stuff for dinner and decide what to do for dinner this week but at that moment it's all too much. it's funny when things decide to rear their heads. I feel that soem people are judging me for the way i feel and the way i react to things and some of the things i am choosing to do or not do, but unless you have been where i have been and where i am now be gentle with me and just think about how you would feel if the screws were in your kids skull and that your child was the one that now looks different and your child is the one who is being stared at when your out and about in public trying to do the normal everyday things.  Denver is meant to be going back to kindergaren tomorrow he's not sure if he wants to and i am scared for him and for me. I will be thinking of him and hoping thst he is ok, not jumping off any thing, or trying to take his helmet off to show peole and that the other kids are kind and just accept it in their stride. I am hopefull that they will be kind to him and to me tomorrow, it is another step forward for us and even if we are a little shaky we are full of hope and what else is there?

still pressing on..

i am still here and still exhausted, i am waiting for it to get better but it's not. i am sleeping believe it or not i am sleeping really well, but i am still waking up exhausted beyond belief, just having a shower is enough to do it and i am out for the count. i didn't think that it would be this hard being back at home. i am not coping. i am full of worry, stress, anger, sadness, loss, exhaustion, disbelief and the list goes on. i am wondering if i am the only one to feel like this once the first cranio volt operation is done, shouldn't i be jumping for joy, embracing the new and feeling relieved but i just feel like that was only the beginning of this long journey. i know that my journey isn't as bad as some and has better out comes than alot of other parents struggling with their children's life threatening illness and conditions, but i can't seem to pull myself out of the whole. I am finding it all really overwhelming and exhausting. i am over whelmed by what we have all been through, what we will continue to go through and every day life feels like too much and is so hard and overwhelming. i feel as though i am sinking. i have a real grief and yearning for life as it was before cranio took over. a life care free, appointment free, scar free, helmet free. i don't want to live and breathe this anymore. at what points do other parents of cranio kids feel OK with it all, i feel as though i am a big suck and need to suck it up. i found myself running away and hiding from people in the supermarket today i don't want to fake smile anymore and say yep it's all fine. you know what Deni is doing really well it's his mum that is struggling. i have decided to go away for the weekend husband and kid free, yep i feel bad leaving them at Easter going some where i didn't think i would go but i need to recharge, i need a break otherwise i will break.  is it just me or are there other cranio mums that struggle so hard. i hope that i am not alone in feeling like this, it is so hard.

i am ...........

We are three weeks post op and day two at home and i am exhausted beyond belief. i don't know if i have ever felt this tired before it feels different this tired. my body is like lead and my brain is in shut down. Deni is doing so well i feel bad about how shit i now feel any one would think that i had the surgery not him. i thought i was doing really well but i think it all hit me the minute i walked in the door. Deni is having separation issues with me, we have been together everyday for three weeks and he has had this huge thing happen to him, i must say i also worry about being away from him. the thought of some thing happening and me not being there is so so scary. it's not that i don't trust others it's all about me and my insecurities. what if he needs me and I'm not there, we have done it all together him and i, held hands through it all. as i write this he is next to me sleeping as he can't go to sleep on his own cause it's to lonely without me on his own. i love my son, he is perfect. but this is so fucking hard. some one said to me the other day at least that's over now it's all done, but you know what it's not I already have appointments for all the follow ups and tests that we have to do next month i thought i might get a little break and find my real life again but it's still at the hospital for now. i want a break but there isn't one not for me and not for Denver. people don't realise that this will continue for the next 12 years we will be doing tests upon tests and hoping that it's all OK. we hope and pray that there will be no more surgeries but in my soul i don't believe for one minute that there won't be more, there is too much stacked u against him medically. the thought of doing more appointments and more tests is pushing me to the edge. i arranged heaps of support for when we were in melb but i am realising now that i need it now that we are home, i am just exhausted and the thought of going back to running a house and doing all those normal things, what the fuck for.  i need sleep and a break, but I'm already on the count down to getting the earlier results of this op. will he hate me for this when he is older, will he lose trust in the medical system, will he become numb to it all. will his children be affected, will i be doing this till i die. i am so exhausted how much longer does this have to go on and no it's not over not by a long shot.

some of the many photo's i have taken during our hospital stay

head before surgery

 

about 3 hrs post surgery

next morning. bruising and swelling starting.

our first cuddle, day after, bliss

swelling and brusing

talking to his brother and sisters, night after op

amazing a smile

great eyes

sleep it's hard to get him to go to sleep, so this is priceless

love

teddy matches

hi mum

friday morning

dr's come to take bandage off

it's a head, a new one

how different is that shape

first time to go outside, 4 days post op

helmet decorating

my favorite photo shows the emotion perfectly

sleeping with the helmet

waiting to leave the hospital

ronald mcdonald house

one week and one day post op

looking good

deni checking out his new head

it feels different

we love sleep

teddy of course gets a matching helmet

gone out for a milkshake

today is....................

today is shit, i am not enjoying today at all. i want to go home,i want my kids, i want to talk to my people, i want to have a bath, i want to not have to use a key to get into my room, i want my bed, my stuff, my garden, my animals, i want to look out my kitchen window and see trees and grass, to go to our local store and get my mail,i want to see for myself how my kids are not have to ask others, i want their cuddles but i really want Deni's scar to disappear.
there is a constant reminder on my son that shows me what we have been through and what we will continue to go through. i am done today i am done. why did this happen? I am tired. who ever thought that we would have to factor in time for my four year old to sit still next to me so he can take his helmet off and scratch his head.WTF. he has a scar running from one ear to the other. it will never completely go away. it will be there for ever. my son looks different and i don't like that, he has changed. i want the old Deni back but with the right skull not the stupid one not the one that causes all these problems. i thought he was perfect when i gave birth to him and to find out he's not, that hurts, it hurts so much.
People think and ask so he's fixed that's it now that the operation is done. and it hurts to say no, we don't know we have to have more tests until he stops growing. we don't know if this operation has worked until we run more tests to compare to before the operation. we still don't know. he's still not perfect in the eyes of the medical world and he will never be for them. he was perfect for me and i want to feel that he is still perfect but i can't yet it is still to raw. i clean his stitches every night and it sucks.
i long to hold a new born baby full of promise and perfect. a new born is magic on earth, i am missing magic at the moment. i long to turn back the clock and hold Denver close look into his eyes as he has a feed, breathe in his smell love him before anyone else touched and judged him.  i want life without appointments, without people starring at my son, i want what i can't have and that hurts.

gold medal please

today i feel like i deserve a medal, after all the shit we have been through the last couple of weeks. where are the medals for the parents. I feel like i am on constant high alert. I have to remember dozens of appointments, not get pissed off when everyone is running late, i have to explain it all to my four year old son and his siblings in a way that's not scary but truth full, i have to hold him down for procedures that he doesn't want or are pain full, i have to remember absolutely every thing about his medical history and have instant memory recall when asked a question by a Dr or nurse, have to entertain a four year old confined to a room and sometimes hooked up to things, have to make sure he wears his helmet all the time, soothe him when he can't sleep because of it, help him figure out how to itch his head while wearing a helmet but staying away from the stitches, i have to keep a relationship going with my other kids that i am separated from, and still have a working marriage so i think i and other mums deserve a god damn medal. having dinner with some other mums at the Ronald McDonald house we all share stories about why we are here, how long for. we all think i don't want to do what i am doing but i am not as bad off as you, so i don't want to do what you are doing either. we are all here for different reasons some ones 6year old son has a brain tumour, her son has a heart problem as seven weeks old, their child is burnt and it just goes on, but we can all still feel each others pain. we know that none of us want to be here but we are all here for the same reason for the love of our kids and we would and do sacrifice everything for their health. there is no stronger love than between a child and a parent and no time is it ever needed more than when there's a health problem. we all deserve medals, some one bring out the medals, you don't need to fly the flag or play the anthem but we all deserve to feel like we are the best for we are the doing our best. no silver or bronze here just gold medals for every one.

he's starting to come back.........

The last few days have been hard to say the least. I can't write about the day of surgery yet I am still processing the day and all that happened but i will say that the surgeons are very happy and it went better than they thought it would.

. I was worried, so worried he survived the surgery, but was it still Deni in there. I was not prepared for the drastic change in Deni appearance, i was told it won't be that bad, that he would still look relative the same, to others he might have but to me he looked so different it was scary. When i walked into recovery from the other side of the room i could see change. His eyes were different, his face was wider he had a look i had never seen before. I know he was in bandages and all that but i had seen that before. to me he was different and the sparkle was gone. I thought that's OK i will get used the different shape but it is taking me longer than i ever thought it would. Deni had always had these amazing eyes and the way he  looked at me was amazing but that was gone. i know you are all thinking the boy just had surgery give him a break, but i really thought he was not there. His voice changed due to having a tube for so long, his eyes were blank, he was covered in bandages, he was connected to so many things i couldn't hug  him till the next day. I was searching for him a glimpse of him, i was not prepared for this. he was there in body but where was my Deni. for a while i wanted to rewind, but i know how unpractical that thought  was. it was hard not to see the Denver i knew and loved for the past four and a half years. this was not the face i saw when i lifted him up after giving birth, this was not the eyes that gazed up at me for all those years of breastfeeding, he couldn't smile his cheeky smile at me we couldn't hug. i know it may seem as though i am over reacting but let me just say i am forever grate full for this operation to save my son, i was just not prepared for the loss of that familiar face for that loving look not to be there. Some people might think he doesn't look to different but if you think of your own kids that you have spent hours looking at and loving you would notice any change to. They took my sons head off piece by piece and then put it back together to form a DIFFERENT shape and a DIFFERENT head. They then pulled my sons face back over the new and different bones that were now his. To me he was not there, the same way that i knew him. How do you say that out loud and who do you say it too, who won't shot you down and say you are silly and it's still him. I was scared to not recognise my own son worried i would stop loving him. today he is slowly starting to come back, he is slowly seeping through. He has started joking with me, asking for our cuddles and being him self. It was when i was giving him a bath tonight that i thought there he is he's back. And it was love.