Life is going aling quite well. All the kids are at school this year and every one is enjoying what this year is bringing them. Denver is really loving prep and looks forward to going each day, he gets tired easily so we just make sure it is within normal limits. We are having longer breaks in between appionments at the childrens hospital which is so lovely, I honestly dont know how we fitted them all in. His eye pressure tests are still borderline for pressure so we still have regular eye checks. Cranio is never far from our lives we are running into Denver wanting to do sports that I am not yet comfortable with. Denver is so very keen to play foot ball he even says mum its ok i will wear my helmet, the special one we need for me to play. But one year post op I am not ready. I am not ready for that, the risk just seems to great for me. I wish I had someone to ask who also had a boy one year post op that wants to play footy, but cranio is a lonely world especially when your child doesnt fit in the normal mould. Is it safe? I am not comfortable one year doesnt seem long enough, surely. So lots of discussions with Denver about playing or not and I think for me this year its too much too soon. Denver  might be eager and ready but his mum is not, I couldnt do it, i couldnt risk it, i dont know if i could survive it. Am i holding my son back or am I justified in my fear. I wish there was someone to ask and go over this with, but no its just me and my fear and the excitment on Denvers face.

one year post op today

So its one year today.
I don't know how I'm meant to feel about that, am i meant to feel anything?
I'm not sad, I'm not angry, I'm not ready to celebrate, I'm not happy, i;m not anything maybe i am just numb to it.
I never really thought this day would come. I don't want to really remember this day last year it was the hardest day of my life. I hope to never ever have to pass my child to some one else and wonder if I will see them again, wonder what they will look like, will they recognise me, will his brain be OK, will it be the same Denver that we gave them that comes out. What will happen.
It was the scariest feeling I have ever had.
What do you do on that day the endless hours that you know your child is fighting for their life. 
How do you go on.
But then I go he made it, he's here, he's OK. Is he different? Yes. I stopped in my tracks when I first saw him after the surgery, he was different, they had changed him, but then he smiled at me and my heart melted and I knew it was him. He is scarred emotionally, physically, mentally and forever. And so is the rest of the family.
I wish it was the end of the cranio journey after that day but it wasn't. It was the end of one part but the beginning of another, but yet not the middle.
We now face seeing if his brain recovers, if he will be OK, if he will need more surgery, if, if, if.
Denver is so wonderful, he warms my heart and adds so much to our family and our lives, he is precious. He is such a trooper. He is so full of love, he is love.
I don't want to remember that day last year, I just want to be able to go to his room tuck him in and give him a kiss and know that all is well in this very moment.
It doesn't matter what will come cause it will come no matter what, but right now I get to breathe him in and I get to kiss him good night and leave him exactly where he is, today i don't have to hand him over to anyone, he is mine all mine.

nearly one year post op

I have been having a really hard week. I couldn't figure out what was going on with me. Why was I down? Why was I sulky? Why was I extra stressed? Why was I overly emotional? What was going on with me?
Then I got it, we are coming up to one year post op for Deni's skull reconstruction. And this Friday we have an appointment with the surgeon and his neuropsychologist. Big day coming up. I thought I would feel relief and joy at having made it to one year post op, but I don't, tonight i feel despair and like the hardest part is still to come. I thought surgery would be the hardest part but today I am thinking that the after marth for me is proving to be so much harder. Because Deni was so much older at diagnoses and then surgery he has a different set of problems to the younger babies, his brain was effected, his learning is effected, his emotional well being is effected, he remembers and is aware of what is happening.
Denver is aware that his teacher helps him out at school more than the other kids, he is aware that every head ache is cause for concern, he is aware and afraid to damage his head, he is aware that he is different. He has been having quite a few headaches the past six weeks and he and I know that it is something we have to talk to his dr about. I hate not knowing, what  his future will hold. How his brain will go. If he will continue to develop and be able to learn new things. I just hate not knowing will he be ok or not. He is sleeping next to me tonight for he knows that in 2 sleeps we go back to the children's, he has his own anxiety about it and I am positive he can feel mine. Today his teacher sent home his evaluation form that the neuropsychologist sent for her to fill out. I sat reading it with tears streaming down my face not because the information was new or surprising I think it was simply because it was there in black and white in front of me, I couldn't deny what i knew and now some one saw and knew it to, its not just me but his teacher sees it too. We both see his struggle. I am low and I don't want to be. I feel so exhausted. It is hard as people think he is 'cured' or it is all over or that the hardest part has been done, but for me that's not the case, I see an uncertain future in front of me as the mum of Denver and an even more uncertain future for Denver. I hate it when people say its OK that's just normal five year old stuff or he will grow out of it. Don't brush his troubles aside because for us they are real too real.
So Denver will continue to sleep in my bed between his mum and dad, his safe spot until he feels confident to go back to his bed and on Friday I will get up smile and get Denver ready and talk to him about the appointments but also about the fun things we will do as well. I am Denver's mum and I am proud of that. 

So Deni is off to school tomorrow for his first day. Deni is my fifth child to go to school and my last, he is my baby. I have mixed feeling about it. I have all the normal feelings about my baby going to school, but when you have a child with extra needs there is another whole new layer to those feelings. First I am so over joyed he has made it, he survived and he is off to school. When your child has extra needs I think you get so used to holding them tight, protecting them, worrying about them, hoping today will be a good day for them with no set backs, we watch them for any sign that sone thing may be amiss for them. Hoping they cope, hoping you cope. I also have all these things that Drs have said about Deni in my head going round and round. I don't think it helps that he got assessed today by his neuro physiologist. (but that's another whole post). We know more than the average parent on how well or not our Childs brain is functioning if it's going along nicely or if there are some areas of concern. Sometimes we can know too much. So although I am excited I am also deeply afraid that Deni will have some problems at school due to all his cranio issues. And we haven't really been apart for that long, we are quite attached. So tomorrow is a big day for so many reasons. All I can hope for is that Deni will have fun, enjoy school, relax, meet new kids, learn new wonderful things, that he will survive without me and that it's all ok. And for myself I can only hope for love, strength, courage, peace that all will be well. We have been through so much, I'm sure we can do thus and do it well. You know what we made it and that's an achievement in it's self.
I love you my baby- Denver James Healy.

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.