Far too much time on my hands . . .

I have had quite a few sleepless night lately and I always think in the middle of the night that it would be a nice idea to do a review of 2009 so here goes . . .

JANUARY

January was actually a month full of hope. We had a new consultant who had us all believing he was the answer to our prayers and everyone was in agreement that 2009 would be the year that we were finally handed back our child from the care of the hospital.

FEBRUARY

After years of consults with psychologists we finally got a diagnosis of High functioning Autism for Cameron. Although it was expected and came and no huge shock a part of me was also quite sad that he know had another label that would never leave him. I also secretly hoped that someone somewhere would tell us that he was not autistic and that he would get better as soon as his treatment stopped. I was able to access help now that he had diagnosis though and that was a very positive step for Cam.

MARCH

Definitely without doubt the highlight of the year - our 2nd once in a lifetime trip to Florida. This is the only place on earth that my family fits in and no one wants to know why cam looks different. We are just a family in the most magical place on earth.

2 things about this trip will stay with me forever
* Keiras face the first time she saw Cinderellas castle - brings tears to my eyes even thinking about it.
* Cameron smiles from the heart for the first time ever when Stitch comes to our table at Ohanas. A memory and a photo we will treasure forever. (I will sort it out and post it over the next few days because it really is special.

We arrived home to a flooded kitchen from a burst pipe - whoops and a letter telling us that Cameron's Miracle operation would be in April.Part of me thought maybe we should have stayed out there!!!

APRIL

OK so this is the month that Cameron has his miracle operation -the operation to end all his pain and the one that we are assured will mean he will never need another operation again.He was in theatre for 4 1/2 hours and for the first time in a long time i got really scared that things were never going to be the same again.
Well how true this turned out to be.
Cams recovery was a long and tiring one and one I will never forget. Because of his autism he refused oral pain relief and was in immense pain and his refusal to take anything meant that he stayed in pain for 7 days - day and night always crying and staying rigidly still !! He even decide he would wet himself where he lay because he hurt too much to get someone to help him move.

May June July August

All of these months were taken up with caring for Cameron post op and passed in a blur of hospital appointments and false hope. The end of august saw us have the worst blow of the year - we were told the operation had not worked but not to panic they were sure a relatively quick procedure would put it right and then we could have normal life as promised way back in January.

SEPTEMBER

After a huge 6 months off school Cameron returned full time. I was so proud of him and he handled the return to school so well. His eye gave us huge issues and the small quick fix operation took place and once again we had hope for that normal life!!
Ben started Secondary school also and during his induction he was asked baout his family - he came home that day really quite and after a lot of coaxing he said he felt that he had done wrong for not telling his class about Cameron's cancer. I assured it it was fine if he didnt want to tell people he didnt have too and at jsut 11 years old he said it wasnt that he was ashamed of Cam it was just that as soon as people know they ask a million questions and he didnt want to tell them because he just wanted to Ben.
A sentiment I totally get I lost my identity the day Cam was diagnosised I'm now the mom of a child with cancer not Louise.
OCTOBER

2 weeks after his operation Cameron was back at school and doing well - to celebrate the fantastic mood of our family we held a Halloween party. Family and friends all together to celebrate the start of our new hospital free life.

NOVEMBER

Less than 6 weeks after his operation we were told again it had not worked and Cameron was still rejecting the implant and therefore it would need to come out and it would need to come out quick if we were to keep any cosmetic result and symmetry to Cameron's face for his adult life.
I have to add here that to us as parents the cosmetic result is so secondary in our mind to his life but it was then explained that the infection in his implant would eventually travel to his brain and the hospital wanted to avoid this at all costs so against my better judgement we agreed to do the operation 14th Dec. Up until this year Christmas was the only thing on the calender that had no negative memories attached and this for me was just another cruel blow to our roller coaster year.

December

Oh my god December was just the most roller coaster month ever - we struggled with the idea of a risky operation and I cried enough tears to be personally responsible for the floods in the uk.Then we found out that Cameron was fighting a huge infection in his eye so the op was cancelled. Just as he was getting on top of that infection and things were looking up for a family Christmas we went into the scary territory of Cameron being tested for leukemia, then liver function tests and finally brain scans - all came back clear and Cameron finally fought off whatever it was that was making him feel so ill on boxing day.

So that was a quick run down of 2009 - here's hoping for a far smoother ride in 2010.

I'm sure any day now we will hear the date for this scary operation but the one thing that 2009 has taught me is that we always have hope and hope can get you through anything.