I always start these journals thinking it won't be too long but i have now realised that a whole month of spillage can not possibly be quick! October 2011 is the beginning of where we slowly learnt that Thi would not be cured. During this month all of the family have had moments where the pain of not having Thisy around has been all too painful. They say the firsts are the hardest. Re living the 13th Oct when the consultant phoned us and spoke to Tony telling us that the operation was going to be impossible. The realisation that we were going to loose the most precious thing in our lives. Then we re live the 18th Oct which was the scheduled day for Matthias to be operated on, which was going to be our final hope for his survival. In retrospect we think of how he would have actually coped with the mutilating surgery. But regardless, the wish that he was still with us mutilated or not is strong. Re living when you are told that it would be palliative care. That moment your world grinds to a halt and and falls into a million pieces. Slowly you pick up each millionth of a piece to create an environment secure for the children, which takes you throughout the final chapter of your dying childs life. In re living these days the emotional and rational again decide to clash and i am filled with guilt. When exhaustion overrides patience, at times i wasn't patient with Thi who was simply trying to go to the toilet for the hundredth time and couldn't go independently anymore. How dare i sigh at this child at 11pm when he too would rather be asleep and independent like normal children. Painful stabbing like a knife turning in my chest when i think of the times i sighed, i am so sorry. And so we decide a move is what we need as a family!!! We didn't choose to move, it came to us in a phone call from a client of Tony's. We spent many low days deciding whether this was the correct thing to do for all the family. For Tony his biggest concern was that we were not going to produce any more pain than we were already going through. We decided to give the process a go and i firmly believed that if it wasn't right something would stop the process... With the house on the market on the friday and sold by tuesday we guessed it was meant to be. As the moving day approaches the amount that has to be tipped and charity shopped is enormous. Clearing the loft for anyone is emotive as you stumble across the little ones bits and bobs. I cleared all baby items from 0-5 years and felt surprisingly ok about it. I know a baby in the Barker house now wouldn't be right. Another baby would never fill the void and it would be a baby on its own... a baby that would never have known or loved our Thisy. Clearing the loft created the inevitable pain when going through bags of clothes and seeing pictures of times gone past. Harder than the baby clothes were the clothes of 12year olds. The clothes that Matthais last wore.Smelling items in the hopes of getting a glimpse of his physical being. Asking Jos if he was happy to wear his clothes or if he would rather brand new clothes he answered " Mummy i think you know the answer to that!" i did know the answer, like me he wants to cling on to every inch of Thi. So Jos will soon wear with pride some of the very stylish clothes that Thi once wore. In all of this i frequently let the children know how i feel so that they are free to talk about how they feel too . Snuggling up to Jos I explain my yearning for Thi and he says " It is going to get harder mummy as time goes on" Yet again my profound mature 8 year old. Xavier after i had shared my emotions of loft turning out he asks to say the prayer at bed time. This is what he said..... Dear God, Love Thi as we are sad for seeing his clothes, remember that being sad is just us remembering that we love him. Amen Living this part of our life is hard as Jos is entering into the year where living with cancer began for Thi. We sent Thi off on a residential trip with Nurofen! Knowing in my heart that something was wrong,but unaware of the severity, teachers thinking i was an overprotective mum. Jos is well and i have to try and trust that he and the other boys will remain well. Most parents can't wait to see their children grown up and with children which i obviously talk about to the boys but deep inside i can't think beyond 10. Will my children reach the age of 10. Horrendous but true. As i falter on all these emotions there has been one person who has talked to me as if we are from the same family. Thats because we are as her son died when he was 16. Embracing each other sharing exactly the same pain we conclude that we have 2 lives. The one before our children died and the one we lead without our child. Its a very different living and yet still a journey in itself. A huge achievement this month has been the unveiling of Thisey's memorial. We invited the year 6's back to the school and a selection of Matthias' friends read out their memories. Quite painful for most of them and Jos started the speeches off with a completely beautiful verse ending with i miss you Thi.... my fantastic brother. We made the front page of the local paper as it was one of Matthias' friends who raised the money to create the master piece labelling the football playground as Thisey's pitch. Every time we go on the school run Jonas runs onto the playground and shouts 'Hello Thisey" Perfection of love for a wonderful boy, loved by many. Finally this month is the 'inspiration to others' awards evening courtesy of Spirit fm a local sussex radio. My niece asked me to nominate my sister in law for her achievement in running the London Marathon and raising over £9000 in honour of Thisy for children with cancer uk. The evening was amazing. The pain too much to contain at times and a standing ovation to prove the inspiration to others. Listening to Matt Cardle was the trigger to twisting pain. Everyone was choked feeling the agony. My whole day had been a roller coaster of emotions and thank goodness for my wonderful support network to catch me and put me back on my feet. The evening came into a full circle where we bumped into a lady who was shocked to speak to us as her son was also called Matthias. I left the evening rung out but ecstatic that there are another couple of hundred people that now know Matthias Barker. Our darling boy the pain remains and will never go. We will love you forever and miss you always. God bless Thisy our wonderful boy xxxxx p.s Matthias has raised over £7000 for CHASE and over £9000 for children with cancer........lets pray this enables other children to experience just a few more years of their lives. Always and forever you star x Posted on October 22, 2012