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.

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.