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.