I have a warrior. He lives in my house. I gave birth to him nearly 7 years ago, but I dreamed of him long before that. He is mighty and strong. He knows his strength. He knows his weaknesses. He knows his mind. He is my warrior and he shows me true strength.

He made this outfit between appointments. I think it shows what is in side of him and he shines so brightly as he walks the walk and strides around with pride. Not only a warrior on the inside but showing his strength and character on the outside. A warrior through and through.

 

 

 



He has wild hair

Denver has always had beautiful blond shinny hair. I have always loved playing with it and running my fingers through his hair. He had a little amount of hair when he was born, it slowly grow and he had a mullet, we then had his first hair cut and it became a little boys hair, over the years we have had long, short, wild, shaved, and we now have long. We are not allowed to cut it. It covers his scar, he doesn't like his friends to see it, he tells me it keeps his brain warm and protected. I hear that people often do this after surgery where there is a scar left a form of protection. So he currently has this beautiful long blond shinny hair that I love to play with, he pushes my hands away but then pushes it back. One day he will be happy to cut it again and not feel the need to keep his brain warm or protected and is scar will be of no concern.

 

I have a son. He is 6 but turning 7 in 13 sleeps. He is cuddly. He is funny. He is clever, He is beautiful. He is energetnic. He is caring. He is testing. He is small. He is my baby. And he has craniosynostosis. And I am his mum. He is 2 years 5 months and 14 days since his CVR. and I feel like we are still at the beginning. He has been struggling for the past months with headaches, tiredness, concentration, hyperactivity, bodily functions and just being ok. And I have been struggling, to comfort him, hear him, encourage him to keep trying and learning even when his head hurts.  Next week we start the rounds of tests again to see if there is a reason an answer a way to fix it. Is there going to be an answer? Maybe Maybe not. I feel that cranio will never leave us. I long to think its all over he is fine we don't have to think about it anymore, go to more appointments, have meeting with his teachers. We can just be normal and not do all the cranio things. But it is not to be. I am not angry or bitter today I am just sad that he has to live with this. My sister had her first baby on Tuesday a Beautiful little boy. I took my kids to meet him and they all loved him. Towards the end of the visit Denver come over to me as I was holding the baby and asked 'is his head ok?' I said yes his heads ok, why do you ask? Denver answered because he has that bump across his head. I then explained how the bones in a babies head move so they can be born and then they slowly move and smooth out. He seemed reassured and like he had an understanding. The bump across the babies head is exactly where Denver's scar is. I felt sad that this would be a concern for him and on his mind, he just wants the baby to be ok and to have a 'normal' head.  I just wish he didn't have the knowledge within him of what cranio feels like. So I go into the eye test, brain pressure test, neuropsychological test, MRI scan with a heavy heart but a hope full one that we can fix what ever is going on. I pray for strength and calm as I hold him down for the needles, the drops the tests and pray that we will be smiling at the end of the day.

 

Avoidance

Avoidance. That is what I have been doing and doing well. I keep wanting to meaning write an update on Denver and his cranio but if i write it I have to think about it and feel it. So avoidance has been my strategy. It hasn't really worked. So were are we. I just read my last post and went wow I was hurting deep. So from that appointment we went back to the cranio surgeon and had an appointment he then referred us to the neurosurgeon as everything that he deals with looks great, so we wait. In the mean time we have our eye/brain pressure test done and they are happy there hasn't been any change in his last two appointments so they are happy for us not to go back for 12 months.  So where are we now. Last Friday we had our appointment with the cranio surgeon for his 2 year post op appointment and he is very happy with the shape of Denver's head, it has grown half a centimetre which they say is great and Denver's head is solid. Denver is given the go ahead that he is now allowed to play football, they would like him to wear one of the footy helmets. Denver is grinning ear to ear he has waited and waited to hear those words 'can play football'. Me not so sure I feel that its a risk to take but the Dr assures  me that Denver's head is as hard if not harder then everyone else his age. I bring up the headaches again and the problems with memory and some of his learning issues. He is furious that we haven't see the neurosurgeon yet as it has been 8 months since he refereed us, he makes an urgent referral. Then he very casually says oh well he probably will have a learning disability with all that has happened to his brain, so its probably just a learning disability. Then he just continues on with what ever he talks about...I cant hear anything else i am stuck on  the words learning disability. We leave the appointment, I am shocked, I am stunned. I get our appointment for the neurosurgeon, our urgent appointment and its for the 22nd May. I go through the day a bit dazed and stunned, lost on where to turn to. What I find really hard is that everyone else forgets about his appointments and therefore forgets to call or message and ask how he went, are we OK? My mum is the only one who calls but unfortunately I haven't had a chance to talk to Matt yet and I am surrounded by my kids, I cant talk we would need to talk at a different time. I wish I had time to talk to her, I wish I could. But its not the right time. I talk to Matt 2 days later its the first time we are alone and OK to talk. He just nods and looks at me, gets angry about how it was so casually said about that he probably has a learning disability. He soon moves on and like Denver he focus on the fact that Deni can now play footy, its been Matt's dream for his son to be like all the other boys and play footy, soon every thing else is forgotten and the focus is footy. Its Matt's coping strategy, its how he copes, he doesn't realise that his coping strategy means I am left alone to face the reality and deal with it all on my own, he has the footy I have every thing else. I'm not angry about it anymore I have accepted that we cope differently but its lonely and hard for me.

 

Denver is still complains of headaches and is really tired, I now keep him at home for a day every couple of weeks as he is just so tired. I take him for a blood test to make sure his iron and vit are OK, they are, so its not that. Damn iron we can fix easily, but its not.

Yesterday Denver described to me that his head hurts at night and that it feels like his bones are moving around bashing into each other and his brain and it makes it hurt. What do you say to that? I just reassure him, talk about how that must feel awful and hug him and love him oh so much. It breaks my heart, he should be free from pain.

Every night we do a reader and Matt did it with him on Wednesday night and I heard Denver's struggle with his reading, letters, sounds, memory from a different angle. I normally do his reader but hearing it from afar i can hear the frustration, I can see him start to fade as his brain comes under pressure, I know he wants it over it wears him out. The next day I call the teacher we need to talk. I go in, we discuss his lack of progress,his fatigue, his struggle, he is not moving forward with his learning, I know it and she knows it. Denver is becoming aware that he isn't advancing like his friends and he wants to so badly. I am disappointed that his teacher hasn't called me in sooner. I impress to her that I want to get it sorted out, get on top of it, I don't want Denver to hate school or learning. She tells me he has been put into reading recovery program and says we can see how he goes with that and maybe then look at getting him assessed. I agree. I explain what the Dr had said and where we are. Assessed I don't really know what that means or what it entails but it sounds and feels like it will be the right step. I am trying not to be angry that Dr's didn't listen to me when he was a baby, the damage to his brain could and should have been avoided. I don't want to feel anger, i know that if I let it start it will consume me and make me bitter, I don't want that. But its hard, their failure to listen and believe the mum has brought us here and will affect us for the rest of our lives. I am yet to get a moment with Matt to tell him about the talk with the teacher he will just nod and carry on. That's OK, I know now that that's him and I am me and we just cope differently and need different things to cope. Me I'm still trying to find the right way, I am always drawn to the ocean when I need to calm the inside. Last night i dreamt of the ocean and just staring out into it, then I dreamt of being able to crawl into a ball on some ones couch and have them stroke my hair and tell me they are there for me and it will be OK.

 

 

This morning I got to send Denver off to school, say to him, I Love you, he replies I love you more, I say I Love you more than infinity, he says you cant cause i love you more than infinity and I love you more.

And those words calm my soul.

                         

 

 

Fuck you Cranio

We are taking a pounding from cranio at the moment, when I say we I mean Denver and I. Since his first headache last month, headaches have now become more regular not quite as bad but still there at least a couple of times a week. We have done the trip to our chiro in the hope that he had just put his neck or back out but no they are still there. Ange before you start shouting at me take him to the Dr's its not as easy as just ringing your GP up and going up the road to see them it's trying to get an appointment with his cranio specialist and then an appointment with his neurosurgeon, and if I ring up and say he needs an appointment that makes it too fucking real that i think some things not right. I am watching for other signs of things not being quite right, he his back in our bed, which means he needs the security of being near us, he is restless in the night which last time meant bad headaches were happening and he is suddenly really tired which relate to the headaches at night. So tomorrow I will pick up the phone and start making the phone calls and then tomorrow it will hit and then tomorrow I will have to tell others that i am taking him back i think there is something wrong. Tomorrow I will tell people and I will still feel as alone as I do today. It wont change anything, I will hear peoples uncertain response and then the change of subject will come or the comment 'well I'm sure there's nothing wrong'. Then they get to walk away and get on with their life.
Denver also got his report like every kid did at the end of last term and it is the first time I have ever wanted to cry at the sight of one. Just to have it in print that there are issues and that he is not where he should be. There is nothing like reading with your child and going through their alphabet with them to have them forget letters or sounds that they knew yesterday, you know and he knows that yesterday he knew it but today his brain wont allow him to access the information. In this world today how does a person get along in life if their memory doesn't work one day as it did the next. Do i get him a tutor? Do i pretend its fine and rosy? Do i do what exactly? It is the first time I haven't shared my kids reports with my family, I am not ashamed of Denver I am trying to save myself.Denver has a cousin his best friend Josef they are the same age and I don't want everyone to see his and then see Denver's and know that Denver is struggling. You may wonder how do that not know already? I am private about this, I don't want to share, I don't want to feel any ones pity or hear any ones it will be fine comment. I don't want anyone to see how deep my pain goes. I am used to doing this on my own, my husband coping mechanism is to pretend that it doesn't exist and that everything is fine, so I am used to feeling it on my own, making the decisions on my own, I cant share deeply with people who don't live it with me, but then no one will ever live it the way I will and do.  So tomorrow is the day, it will start with the phone calls and then the one sided conversation with my husband where i talk and he nods.

hum ho

It seems that cranio is on my brain alot at the moment I'm not sure why it's just there. Denver last eye test went perfect he has perfect vision and there has been no change in the pressure at the back of his eyes so great news. I can just never forgive myself for having to physically hold him down to get the drops in his eyes they sting him and make his vision really blurry so he cant see and this time the drops didn't work the first time so had to be done again. I just wish it was gone. This week we also received his latest neurophysocial assessment and who on earth wants to get on of those in the mail and this is our second. And it wasn't even that bad he has improved in many areas and is the same in others there will always be things that will be hard for him but i hate getting it in writing and having to process it. We also received a form home to fill out for the school nurse when she comes around there is nothing like having to fill out yes to every specialist that they list and ask has your child seen them in the last twelve months. He also suffered his first real bad headache since the op and it lasted all day and he didn't move off me all day. It was a bit of a shock as he hadn't had one in a year. holy shit i just wish the ground could have swolled me up and take me some where else away from this. And that's just me that's not even covering Denver and what he goes through.
I found it really hard when people ask me at the deli, or in a line or so out of the blue, i am prepared and OK when I'm chatting with some one i know but don't stand next to me at the deli and just suddenly expect there to be an in depth conversation about Denver and how he is going. Denver has school photos are coming up and I'm worried that he will look funny or ugly or wrong. Other people tell me they don't notice or cant see any thing different about it but i can I'm his mum and i can. I want my mind to stop. I want Denver to be healed and me heart to stop hurting.

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.