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.