We were safe then

This picture popped up on my computer screen today as I was walking past and the first thing that came to my mind was, oh we were free then. Then I caught my own thoughts, free, free from what. And then i realised this picture is two years ago at my 30th birthday. This was before we had ever heard the word craniosynostosis and knew what it meant. We were free from all that goes with cranio. Denver had never known pain from an operation, never knew to fear Drs and nurses, had never had an x-ray or a ct scan. He had a regular GP not 5 specialist. We were free to love and live normally, we didnt have endless appointments, we didn't belong to support groups, I didn't feel robbed, robbed of being a normal mum with the normal worries, I didn't worry if the pressure in Denvers head was to much for his brain, I didn't worry about him going to school and being able to learn like everyone else, I didn't worry that he wont be able to play contact sport when he grows up, I didnt' worry about feeling like I was neglecting my other children and husband. I didnt worry and I didnt grieve for a normal life. I was free from the grief that comes with cranio, I was free from sleepness nights of worry. I wasnt angry.I wasnt depressed. I wasnt a cranio mum I was just a mum and he was just my son, not my son with cranio, not the one I hold down for appointments.

 I was simply free and so was he.  

If only i knew then what I know now. I probably wouldnt believe it if anyone told me what would happen, but I would know not to take those moments for granted and think they would last a life time. I could be prepared for the shadow that would come and hover over our family, I would be better prepared for the feeling of empty ness and the feeling of being alone, I would be prepared fro when everyone else would move on and i would still be stuck here in the cranio world. 

Two years ago we were free.

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.